Early Psychosocial Interventions

in Dementia
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Depression in Later Life

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Involving Families in Care Homes

A Relationship-Centred Approach to Dementia Care
Bob Woods, John Keady and Diane Seddon
ISBN 978 1 84310 229 8
Bradford Dementia Group Good Practice Guides

The Pool Activity Level (PAL) Instrument for Occupational Profiling

A Practical Resource for Carers of People with Cognitive Impairment
3rd edition
Jackie Pool
ISBN 978 1 84310 594 7
Bradford Dementia Group Good Practice Guides

Design for Nature in Dementia Care

Garuth Chalfont
ISBN 978 1 84310 571 8
Bradford Dementia Group Good Practice Guides

How to Make Your Care Home Fun

Simple Activities for People of All Abilities
Kenneth Agar
ISBN 978 1 84310 952 5

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Reminiscence in Dementia Care: A Guide to Good Practice
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Foreword by Faith Gibson
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Bradford Dementia Group Good Practice Guides
Early Psychosocial
Interventions in Dementia
Evidence-Based Practice

Edited by Esme Moniz-Cook

and Jill Manthorpe

Jessica Kingsley Publishers

London and Philadelphia
First published in 2009
by Jessica Kingsley Publishers
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London N1 9JB, UK
and
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Library of Congress Cataloging in Publication Data

Psychosocial interventions in early dementia : evidence-based practice / edited by Esme Moniz-Cook
and Jill Manthorpe.
p. ; cm.
Includes bibliographical references.
ISBN 978-1-84310-683-8 (pb : alk. paper)
1. Dementia--Patients--Care--Europe. 2. Evidence-based medicine--Europe. I. Moniz-Cook, Esme.
II. Manthorpe, Jill, 1955-
[DNLM: 1. Dementia--psychology--Europe. 2. Evidence-Based Medicine--Europe. 3. Psychother-
apy--methods--Europe. WM 220 P9745 2009]
RC521.P79 2009
616.89--dc22
2008024649

British Library Cataloguing in Publication Data

A CIP catalogue record for this book is available from the British Library

ISBN 978 1 84310 683 8

ISBN pdf eBook 978 1 84642 865 4

Printed and bound in Great Britain by

Athenaeum Press, Gateshead, Tyne and Wear
Contents

List of Illustrations 7
Acknowledgements 9
1 Introduction: Personalising Psychosocial
Interventions to Individual Needs and Context 11
Esme Moniz-Cook and Jill Manthorpe

PART I SUPPORT AT THE TIME OF DIAGNOSIS 37

2 What Do We Tell People with Dementia about 39
Their Diagnosis and How Do We Tell Them?
Hilary J. Husband
3 Timely Psychosocial Interventions in 50
a Memory Clinic
Esme Moniz-Cook, Gillian Gibson, Jas Harrison
and Hannah Wilkinson

PART II COGNITIVE AND MEMORY SUPPORT 71

4 Working with Memory Problems: Cognitive 73
Rehabilitation in Early Dementia
Linda Clare
5 Cognitive Stimulation for People with Mild 81
Cognitive Impairment and Early Dementia
Inge Cantegreil-Kallen, Jocelyne de Rotrou
and Anne-Sophie Rigaud
6 GRADIOR: A Personalised Computer-based 93
Cognitive Training Programme for
Early Intervention in Dementia
Manuel Franco, Kate Jones, Bob Woods
and Pablo Gomez
7 Memory Groups for People with 106
Early Dementia
Molly Burnham
 8 Health Technologies for People with 115
Early Dementia: The ENABLE Project
Suzanne Cahill, Emer Begley and Inger Hagen

PART III PSYCHOLOGICAL, EMOTIONAL 133

AND SOCIAL SUPPORT
9 Group Psychotherapy for People with 135
Early Dementia
Richard Cheston
10 Art Therapy: Getting in Touch with Inner Self 146
and Outside World
Steffi Urbas
11 A Host of Golden Memories: Individual 156
and Couples Group Reminiscence
Irene Carr, Karen Jarvis and Esme Moniz-Cook
12 Developing Group Support for Men with Mild 174
Cognitive Difficulties and Early Dementia
Jill Manthorpe and Esme Moniz-Cook
13 Group Psycho-Educational Intervention 186
for Family Carers
Rabih Chattat, Marie V. Gianelli
and Giancarlo Savorani

PART IV DEVELOPING EVIDENCE-BASED 199

PSYCHOSOCIAL SUPPORT SERVICES
14 The Meeting Centres Support Programme 201
Rose-Marie Dröes, Franka Meiland, Jacomine de Lange,
Myrra Vernooij-Dassen and Willem van Tilburg
15 Personalised Disease Management for 211
People with Dementia: The Primary
Carer Support Programme
Myrra Vernooij-Dassen, Maud Graff
and Marcel Olde Rikkert
16 Carer Interventions in the Voluntary Sector 222
Georgina Charlesworth, Joanne Halford,
Fiona Poland and Susan Vaughan
List of Contributors 230
Index 234
LIST OF ILLUSTRATIONS

Tables
1.1 National circumstances: epidemiology and mental 12
health facilities
1.2 Guidelines for choosing psychosocial intervention 30
5.1 Contents of a Cognitive Stimulation session 84
8.1 Description of assistive devices being tested in Ireland 119
8.2 Socio-demographic and cognitive characteristics of people 121
with dementia
8.3 Use of products reported by person with dementia six months 121
after devices were installed
8.4 Carers’ perceptions of use of products by their care recipient 122
six months after installation
8.5 Carers’ own use of assistive devices six months after installation 123
8.6 People with dementia – usefulness of assistive devices six months 124
after installation
8.7 Carers’ perceptions of usefulness of assistive devices for 124
person with dementia six months after installation
11.1 Results of Autobiographical Memory Interview (AMI) scores 168
13.1 Change over time on relevant outcome measures 193
16.1 Pre- and post-group mean scores (standard deviation) for 225
24 participant carers

Figures
3.1 Using a simplified ‘cognitive map’ to discuss 59
the memory assessment
3.2 Example of written information provided for Fleur 60
and her family
6.1 Effect of GRADIOR on Paula 103
8.1 Pictorial examples of the assistive technologies evaluated 120
in Ireland
10.1 ‘Without Words’ 149
10.2 Angela’s ‘mandalas’ 150
10.3 The priest’s holidays 152
11.1 Harold’s collage 164
14.1 The programme and its goals 206
Boxes
1.1 Illustrations of individually desired outcomes 25
3.1 Family workshop: ‘Understanding and Coping with Memory 56
as You Get Older’
6.1 Overcoming practical obstacles to the application 96
of neuropsychological rehabilitation programmes in dementia
6.2 Example of how the GRADIOR system works 99
6.3 Adam and his wife: rehabilitation with GRADIOR 101
6.4 Paula – intervention with GRADIOR 102
7.1 Topics covered on memory group therapy course 109
7.2 An example of a course handout 110
12.1 Background of three men in one group 178
12.2 What would you like from these group sessions? 183
12.3 The importance of wives 183
15.1 Questions for carers and potential strategies 215
 Acknowledgements

Our sincere thanks to Linda Clare for initial help with manuscript preparation,
staff at the Hull Memory Clinic, UK, for ongoing support over the past decade,
Margaret Bowes and especially Clare Wilder for assistance in updating
chapters. We also sincerely thank Alison Greenley and Andrew Walker for
their dedicated patience and assistance in bringing this work to completion.
Some of the material in this book was co-funded by the Commission of
European Communities with The University of Hull, UK, Hull and Holderness
Community Health NHS Trust (now Humber Mental Health Teaching NHS
Trust) UK, and the Eastern Health Board, Dublin, Ireland, between
1 December 1997 and 1 December 1999 – FILE NO: SOC 97 201452 05F03
‘Early Detection and Psychosocial Rehabilitation to Maintain Quality of Life – A
Training Package in Dementia’ and we thank them for this early support.
We thank members of INTERDEM for their continuing inspiration and
collegiality, especially the authors of the chapters in this book. This book is
dedicated to the people with dementia and their supporters across Europe who
have permitted us to tell part of their stories and shared their experiences. In all
cases described we have used pseudonyms. The cover of this book has been
reproduced from the case material in Chapter 11 (figure 11.1), first developed
as training materials for the use of collage in early stage dementia by Karen
Jarvis (Community Mental health Nurse) as part of the Queens Nursing
Institute and the Alzheimer’s Society Fund for Innovation: Excellence in
Dementia Care Nursing Award.
Chapter 1

Introduction: Personalising
Psychosocial Interventions
to Individual Needs
and Context
Esme Moniz-Cook
and Jill Manthorpe

Overview
This book describes the emerging evidence base for psychosocial interven-
tions in dementia care. It uses examples from practitioners and researchers
working in a range of settings across Europe. This first chapter makes the case
for developing pan-European psychosocial interventions to support older
people with suspected or early dementia and their families. It then outlines
how the interventions described in subsequent chapters can be personalised to
individual concerns and contexts. Four areas of early intervention are
considered:
• at the time of diagnosis
• cognition and memory-oriented support
• psychological and social support
• service developments within which these interventions can be
based.
The chapter concludes with a stepped care framework for psychosocial inter-
vention in early dementia.

11
 Table 1.1 National circumstances: epidemiology
and mental health facilities (*source: www.who.int/mental_health)
EU country Incidence of dementia Prevalence of dementia *Percentage of *Percentage of health *Number of specialist medical
health budget to budget on mental professionals per 100.000 population
gross domestic health expenditure (where known)
product (GDP)
The Netherlands Age 55+ 9.8/1000 (Ruitenberg et al. Total: Age 55+ 6.3% 8.8 7 Psychiatrists 9
2001) (Ott et al. 1995) Psychologists 28
Males 10.5: Females 17.3 (Launer et Neurologists 3.7
al. 1999)
Belgium Age 60+ 0.53 (Buntinx et al. 2002) Age 65+ 6–9% 8 6 Psychiatrists 18
(Ylief et al. 2002) Psychologists
Neurologists 1
UK Males 10.7 Ages 65–70 1 in 50 5.8 10 Psychiatrists 11
Females 18.5 Ages 70–80 1 in 20 Psychologists 9
(Launer et al. 1999) Ages 80+ 1 in 5 Neurologists 1
(Alzheimer’s Society website)
Spain No information available Total: Age 65+ 5 (Lobo et al. 8 No information Psychiatrists 3.6
1995)-16% (Vilalta-Franch et al. available Psychologists 1.9
2000) Neurologists 2.5
Italy 150.000 new cases per year Males 5.3% Ages 65–84 9.3 No information Psychiatrists 9
(Di Carlo et al. 2002) Females 7.2% Ages 65–84 available Psychologists 3
(Ilsa 1997) Neurologists
Portugal No information available No information available 8.2 No information Psychiatrists 5
available Psychologists 2.8
Neurologists 2.3
France Males 11.5 Age 65+ 5% (Ramaroson et al. 2003) 9.8 5 Psychiatrists 20
Females 15.2 (Launer et al. 1999) 800.000 prevalent cases Psychologists
165.000 new cases per year ³ 75: 18 % Neurologists
(Ramaroson et al. 2003) (Ramaroson et al. 2003)
Ireland 4000 new cases per year (Keogh and Age 65+: 5.5% 6.2 7.7 Psychiatrists 5
Roche 1996) (Keogh and Roche 1996) Psychologists 9.7
Neurologists 0.4

Taken from Vernooij-Dassen et al. (2005).

 Introduction: Personalising Psychosocial Interventions 13

Rationale for this book

Dementia is a major problem of later life for many, although not all, older
people. As the population ages, demand for support services is likely to
increase dramatically. The complexity of the needs of people with dementia
and their carers presents challenges across Europe (see Table 1.1), exposing the
lack of co-ordinated approaches to policy and the limited attention by profes-
sionals and services to meeting people’s needs for support and care in most
states (Warner et al. 2002).
There is little for practitioners in the way of internationally accepted
evidence-based psychosocial interventions for people with early dementia,
since, not only is evidence-based practice in psychosocial intervention difficult
to achieve (Woods 2003), but where it exists studies have understandably con-
centrated on the difficulties of care when the person’s symptoms may be severe
and disabling (Parahoo, Campbell and Scoltock 2002). Thus, most dementia
care intervention literature relates to family carer ‘burden’, nursing home care
or drug therapy. As we shall see in the chapters of this book, this does not mean
that there is no evidence for psychosocial intervention in early dementia since,
in an overview on the subject, Woods (2003) concludes that: ‘as with many
other fields of research, probably the biggest question is how to implement
widely what has already been identified as good, evidence-based practice’
(p.6).
There are at least four reasons for the lack of widespread knowledge of the
emerging evidence base for early psychosocial intervention in dementia care,
particularly on what can be offered to people with dementia themselves. We
shall consider each of these and outline how this book may help to address
these gaps in current knowledge and associated practice.
First, is the belief that local or national contexts are unique and that
knowledge and practice is not translatable, with a tendency for practitioners to
confine themselves to their own local or national contexts. This book chal-
lenges this perspective and seeks to reduce the current reliance on a few pas-
sionate champions, valuable as they are, to spur change in dementia care. There
are, indeed, growing opportunities for practitioners across Europe to learn
from services that are embedded within national health and social care systems
that have been working beyond experimental or project status for some time.
We suggest that there is much to learn from each other across nations and that
practitioners in English-speaking countries such as the UK may often miss op-
portunities to explore intervention and support in dementia care that have de-
veloped throughout mainland Europe. Taking a pan-European perspective
reveals the richness of psychosocial support in practice and potentially offers
much to learn of what works and what does not. Despite the nation-specific
14 Early Psychosocial Interventions in Dementia

cultures, different models of health and social care services, diverse languages,
varying professional roles and funding routes (Vernooij-Dassen et al. 2005),
European states are a fertile arena in which to explore how people with
dementia at an early stage can be supported to enhance their quality of life and
well-being.
Second, is a weakness in research and practice in dementia care since this
has, understandably, concentrated on the position of family carers. Whilst the
needs of families are highly relevant to Europe, especially in states where
family and female kin shoulder most caregiving responsibilities (Cameron and
Moss 2007), this perspective has until recently tended to obscure the potential
for psychosocial support for people themselves, including what they may need
to understand and manage the day-to-day consequences of living with a
dementia. Apart from the concluding chapters of this book in Part IV, where
services are described as a context within which older people with early
dementia may be supported, the focus of most chapters is weighted towards
the support of people with dementia. However, given the family caregiving lit-
erature which suggests that the most effective psychosocial interventions are
those that include both the person with dementia and their family carer
(Brodaty, Green and Koschera 2003), we have made the assumption that most
psychosocial interventions, whether directed at the person or the family
1
‘carer’, inevitably have to take into account all aspects of supportive systems
including the person and primary ‘carer’, the wider family and supporting
friends.
Third, is the definitional issue of early dementia, because this is where bio-
medical or clinical processes associated with early detection, recognition and
diagnosis often compete with practice and research in psychosocial interven-
tion and/or rehabilitation. Unlike the former, the latter has its roots in atten-
tion to individual differences, theories of personality and human motivation,
identity theory, life span psychology, social psychology and relationships, all
of which guide the growth and targeting of psychosocial interventions. They
are also influenced by social construction approaches that affect the wider
context of services for people with dementia.
Most of the interventions and services described in this book are for older
people and their families, since it is this age group that most generally experi-
ences emerging or newly recognised dementia – referred to for ease as early
dementia. Early or newly diagnosed dementia is an area where services are in-
creasingly needed to meet the rising interests and other policy developments.
Having a diagnosis of dementia is only the start of the process of recognition
and the potential for a ‘care gap’ (Iliffe and Manthorpe 2004) may emerge,
when people are left with a diagnosis but little support during the early stages
of their dementia. A partial exception to this is, of course, where licensing of
 Introduction: Personalising Psychosocial Interventions 15

the anti-dementia drugs in early dementia has driven whole systems of support
for those who are eligible for drug therapy. For example, in the UK and
Ireland, a recent textbook for community mental health nurses (Keady, Clarke
and Page 2007) opens its section on professional practice with issues sur-
rounding Alzheimer’s medication (Beavis 2007) and nurse prescribing (Page
2007). The hope and optimism brought to dementia care for people, families
and practitioners through drug therapy developments remain an important
opportunity when these early intervention medication services also adopt a
public health promotion component (Beavis 2007, pp.111–112). However,
these often have developed: ‘on an ad-hoc basis, rather than by following a
defined evidence based protocol’ (p.112).
Some commentators suggest that in terms of resource allocation the pre-
vailing disease model of dementia and associated pharmacological approaches
compete unfairly with other forms of support that may be important to people
with dementia (Heller and Heller 2003). This may be one reason for poorly
conceived and ad hoc development of proactive health promotion and
psychosocial interventions. Chapter 3 of this book outlines a primary care
based psychosocial intervention (incorporating a health promotion compo-
nent) in a memory clinic. This was evaluated in an exploratory randomised
controlled trial, prior to the widespread introduction of the anti-dementia
(acetylchoninestrase inhibitor, AChEI) drugs in the UK.
Many governments stress the importance of early detection in their
dementia strategies to help prepare individuals and their carers (Moise et al.
2004) and in the UK this is a focus of the National Dementia Strategy (to be
published late 2008). Timely recognition of dementia might have different ex-
pressions across Europe owing to national variations in priorities, resources,
service patterns and professional cultures. However, practitioners face similar
problems in supporting increasing numbers of people with newly diagnosed
dementia and making a reality of the advantages of early recognition.
A fourth reason for lack of knowledge of what can be done to support
older people with early dementia themselves relates to what has come to be
known as the ‘double stigma’ of age and dementia (Benbow and Reynolds
2000). For example, many of the interventions outlined in the chapters of this
book were documented in DIADEM, a pan-European study of dementia in
eight European states, where it was noted that irrespective of dementia re-
sources, the stigma associated with dementia was an overriding factor in many
countries and seemed to explain the lack of supportive interventions or
underuse of these where they existed (Vernooij-Dassen et al. 2005). This
finding sets the interventions described in this book within an explanatory
context. We suggest that developing practice or services is not a simple
matter of arguing that the evidence for their benefits is robust, or that such
16 Early Psychosocial Interventions in Dementia

interventions have the potential to work alongside pharmacological treat-

ments, or that there is scope for these when pharmacological treatment is not
possible. In addition, practitioners and service developers need to address the
stigma of dementia in their approaches to supporting older people with sus-
pected dementia and their families. In our view, stigma is a powerful explana-
tion for why, despite the small but sound emerging evidence for psychosocial
support, services for people with early dementia remain underdeveloped or
underused. Furthermore, the construct of stigma affects not only people with
dementia but also those associated with this disability, including families,
other supporters and health and social care professionals.

Understanding stigma in dementia

Stigma is a social construct which can underpin biomedical constructs of age
and dementia in health and social care provision. Older people with dementia
have to overcome the double stigma of age and dementia, both of which inevi-
tably affect the quality of their lives, the services that support them and the
national policies that underpin these services.
Three types of stigma, reflecting a process of disqualification whereby a
‘normal’ person is reduced to a person with whom something is wrong, were
conceptualised by Goffman (1963) and each of these can be understood in the
context of dementia. The first relates to differences of the physical human
body and appearances, such as physical impairments or disabilities. For
example, older people with suspected dementia and their families often associ-
ated dementia with inevitable difficulties with mobility and loss of control of
vital body functions (Moniz-Cook et al. 2006). The second relates to the view
that an individual has personal ‘blemishes’ which negatively affect social
status. In dementia care, ageism (the view that older people are rigid, inflexible,
unable to change), combined with biomedical disease models of dementia as a
progressive disease, appears to have fostered the belief among some profes-
sionals, such as family doctors across Europe, that nothing can be done in early
dementia (Vernooij-Dassen et al. 2005); thus perhaps unfairly disqualifying
people with dementia from rehabilitation services and resources. This second
type of stigma is also seen in the view that having dementia inevitably results
in ‘madness’ – that is, a ‘spoiled’ social identity. For example, people with sus-
pected dementia and their families at a memory clinic have reported fears of
loss of ‘mind’ and worries about the effects on personal relationships
(Moniz-Cook et al. 2006). The third type – ‘tribal stigma’ – refers to the
grouping of individuals and negative perceptions of the group. In the present
service context groupings occur based on age and cognition. The consequence
is a marginalisation of older people with dementia within health and social
 Introduction: Personalising Psychosocial Interventions 17

care systems and also other facilities such as those related to housing, leisure
and cultural activities. Tribal stigma in dementia is also seen in the view that
people with dementia do not have ‘capacity’ to make any decisions due to cog-
nitive loss and that decisions must therefore be made for them. Thus, the views
of other people, such as family members, are seen as sufficient, and where
family carers become distressed, few options for the continued support of the
person with dementia in the home exist. One consequence of this is inappro-
priate and undesired admission to care homes, rather than tailored commu-
nity-based services of the sort that are increasingly available for and demanded
by younger people with disabilities across Europe (Cameron and Moss 2007).

Addressing stigma in early dementia

To summarise the process by which the types of stigma seems to occur in
dementia, we suggest that the unifying concept is that of a ‘spoiled identity’,
although this has yet to be fully informed by the views and experiences of
people with dementia. A study of the experience of people in the early stages
of dementia note that whilst most perceived their quality of life as ‘good’ and
were satisfied with it, many had experienced stigma, which they believed had
affected their lives (Katsuno 2005). Furthermore, stigma leading to high inter-
nalised shame and low levels of personal control can be particularly marked in
dementia in comparison with other neurological impairments (Burgener and
Berger 2008). Stigma rests on the belief that there is little to offer people with
dementia, since it is a deteriorating disease, leading to a reluctance in making
an early diagnosis and pessimism about prognosis, which in turn forges
another link in the chain of rehabilitative nihilism – that nothing can be done
– in early dementia. Stigma may therefore influence delays in recognition and
diagnosis through the processes of concealment, minimisation or the ignoring
of early signs and symptoms. Even where a diagnosis of dementia is strongly
suspected, stigma and a desire to protect individuals are often cited by profes-
sionals as a reason for not disclosing a dementia diagnosis (Bamford et al.
2004), particularly since the area is often emotionally highly charged with
family fears (Moniz-Cook et al. 2006) and potentially influenced by preceding
‘protective caregiving’ whereby spouses may believe that they are protecting
the self-image of their partner with a developing dementia (Gillies 1995).
Thus, in the early stages, ‘wait and see’ or ‘wait until it progresses’ are
commonly held views among older people with suspected dementia, families
and many professionals such as family doctors. Furthermore, whether or not
an anti-dementia drug is available or relevant, the option for psychosocial in-
tervention may be undermined. Even when pharmacological or drug treat-
ments are used, the ‘search for a cure’ may obscure family and professional
18 Early Psychosocial Interventions in Dementia

efforts towards psychosocial interventions to minimise the extra or preventable

disabilities that are often associated with dementia.
The interventions and services outlined in the chapters of this book
address some of the consequences of stigma in early dementia. For example, in
line with the growing involvement of people with dementia in public events
and services (Clare, Rowlands and Quinn 2008), improved health promotion
interventions at an early stage (Chapter 3) provide avenues for counteracting
the first type of stigma. Practitioners can also use the time of diagnosis
(Chapters 2 and 3) as an opportunity to strengthen personal and social identi-
ties for people with early dementia. Some of the interventions outlined in Part
III (Chapters 10–12) have further scope in early dementia for strengthening
personal and social identities though maintaining valuable family and social
relationships. Social stigma associated with dementia that prevents service de-
velopment has been addressed in the Netherlands (Chapter 15) where there
are now well-designed studies of case management of dementia in primary
care (Jansen et al. 2005). Developing ongoing timely psychosocial interven-
tion and support for people with dementia from the start (Chapter 3) is a first
step towards counteracting ‘tribal’ stigma. In addition, there are now studies
showing that people with dementia living at home and in care homes are
capable of learning new information (Chapter 4; Bird 2000; Camp, Bird and
Cherry 2000; Clare and Woods 2001) and that they may have ‘cognitive
reserve’ suggesting that the brain may actively attempt to compensate for the
challenge represented by damage due to dementia (Stern 2007). These studies
continue to challenge the notion, which we suggest has its origins in ‘tribal’
stigma, that rehabilitation and recovery are not possible in dementia. There is
growing evidence (Mittelman, Epstein and Pierzchala 2003; Mittelman et al.
2006; Moniz-Cook et al. 2008a; Chapter 13) and new studies (Joling et al.
2008) showing that families can be trained and supported to maintain their
own well-being and minimise distress through timely psychosocial interven-
tion and ongoing support. This offers other practical ways by which ‘tribal’
stigma and its negative consequences may be reduced for people with
dementia.
The similarity of the process and consequences of stigma that we have
outlined was striking across all European states that participated in the
DIADEM study (Vernooij-Dassen et al. 2005). As noted previously, in most
cases this did not seem closely associated with investment in services or avail-
ability of professional support. However, the precise nature and processes of
stigma across nations remain complex, since stigma attached to dementia is
manifested by differences both within and amongst European countries (Iliffe
et al. 2005) and by some common themes. For example, the prevailing hesita-
tion surrounding early recognition by family doctors is stronger in some coun-
 Introduction: Personalising Psychosocial Interventions 19

tries such as Spain and Portugal where physicians seem to be particularly wary
about providing a diagnosis of dementia (lliffe et al. 2005), whilst in the Neth-
erlands and the UK guidelines exist to help professionals overcome the known
obstacles to timely recognition and diagnosis (see NICE/SCIE 2006; SIGN
2006; Wind et al. 2003). In some countries, such as Portugal, avoidance of the
‘dementia’ label is related to resources, since it may limit access to nursing
home care (lliffe et al. 2005), whilst in others such as Belgium there is a
national and sometimes polarised debate on the rights to refuse treatment or to
have it withdrawn, with one view that ‘suffering’ from dementia reflects an un-
dignified existence and another (predominantly from the Alzheimer societies)
that preserving the dignity of people with dementia is an important endeavour.
This polarisation may be underpinned by stigmatised public attitudes, since a
literature review of the perspective of patients with dementia suggests that
they are often active agents in minimising their suffering and coping with the
challenges that they face (de Boer et al. 2007). In countries where guidelines
for professionals have been developed such as the Netherlands (Wind et al.
2003), Scotland (SIGN 2006) and England (NICE/SCIE 2006) there is the
potential for extracting the necessary detail on the observed variation and its
causes which may also offer suggestions about the pattern of services. Devel-
oping guidelines for professionals where these do not exist or updating them
to address the obstacles to timely diagnosis, for example, as in the Netherlands,
are change strategies that can improve professional practice. They can also
foster greater debate surrounding the tensions that exist across practice where
some desire to minimise harm through avoiding early diagnosis whilst others
believe that this conflicts with autonomy and human rights.
The consequence of the double stigma of age and dementia combined
with family fears is that practitioners, researchers and students alike quickly
realise that working with people with dementia on a day-to-day basis entails
personal emotional investment as well as organisational and political skills.
This means that they too need support and that this should be part of any
service or locality. Attention to increasing public awareness needs to be
matched by better support for those working in this area, whether they are part
of large organisations or work on their own directly for people with dementia
and their families (Breda et al. 2006).
The variety and range of innovation, psychosocial practice and service de-
velopment across Europe are increasingly combined with campaigns to raise
public awareness of dementia. In some countries such as the Netherlands, the
UK and France, where there are strong Alzheimer societies and disabled
people’s movements, the power of stigma appears to be decreasing in the
general population. Shame associated with having a family member with
dementia may also be gradually declining in these countries, with the growing
20 Early Psychosocial Interventions in Dementia

self-confidence of carers’ groups, campaigning organisations and people with

dementia themselves (Friedell and Bryden-Boden 2002) informing the debate
on what is needed. However, practitioners working in mainstream services for
people with early dementia will also need to provide leadership if the aspira-
tions for a rapid expansion of early psychosocial interventions are to be
realised. Practice developments will need to occur in both specialist teams as
well as more generic settings, such as community centres, adult education and
primary health and social care.
Well-developed early interventions will be their own ambassadors for ad-
dressing stigma and reducing professionals’ apprehension about leaving
people with a diagnosis, but without support. This book provides examples of
such services and it is notable that they do not report any lack of interest or
demand for what they offer and reflect much of what people with dementia
outline as important in early dementia (Bryden-Boden 2002).

Psychosocial intervention in early

dementia
Readers are likely to be familiar with many techniques and services that come
under the psychosocial umbrella and may have encountered advocates for
many of them. We will briefly describe the interventions that can be broadly
classified as psychosocial to set the context for this book. These are wide
ranging but all aim to minimise the risks of future disability. They include:
• signposting
• intensive communication methods
• standard psychological therapies
• therapies to promote well-being.

Signposting
Signposting involves alerting a person and the family to an informative
website on dementia, or to internet-based support with others across the
world, or to the Alzheimer’s Society for local information, or to handing out
educational information sheets.

Intensive communication methods

These methods include telling people their diagnosis and about the provision
of therapeutic support, fostering positive attitudes towards rehabilitation in a
person with dementia and their support networks.
 Introduction: Personalising Psychosocial Interventions 21

Standard psychological therapies

These include cognitive therapy, behaviour therapy, anxiety management and
relaxation, psychotherapeutic group work and individual life review, which
have shown benefit in reducing distress in people with dementia and their
carers (see the overview by Moniz-Cook 2008), where anxiety, depression and
conflict are present.

Therapies to promote well-being

Most of the interventions described in this book are concerned not with the
treatment of existing distress, but with the prevention of distress and the asso-
ciated extra disabilities that can ensue. This can be achieved by fostering
positive attitudes towards rehabilitation in the person with dementia, the
family and other support networks. Some of these psychosocial interventions
have been subject to the ‘gold standard’ of randomised controlled trials or such
trials are currently underway. The best known of these that may be applied in
early dementia services are: those that promote cognition (i.e. Cognitive Stim-
ulation Therapy, CST; Cognitive Training, CT; and Cognitive Rehabilitation,
CR); those that support psychological and social relationships (such as
activity-based reminiscence); those that support family carers; and those that
support both the person with dementia and the carer. Each of these will be
examined next.
Group CST (or what was known as reality orientation) developed its early
evidence base in France with subsequent evidence from the UK studies by
Spector and her colleagues (www.cstdementia.com/index.php, accessed 2
August 2008) reporting a positive impact on cognition (comparable to pub-
lished studies of pharmacological studies of the acetylcholinesterase inhibi-
tors) and quality of life (see Moniz-Cook 2006). Studies of individual
in-home CST are yet to emerge, although in Italy, Onder and colleagues
(2005) used a standardised session-based manual to deliver CST (described as
reality orientation) for 30 minutes three times per week over 25 weeks. With
recent international interest in the concept of Mild Cognitive Impairment
(MCI) and aspirations to offer support to protect against progression to
dementia (Tuokko and Hultsch 2006), application of group-based CST to
people with MCI has been described by the team at Broca Hospital, France
(Chapter 5). The notion of cognition as a muscle that requires exercise (i.e. CT)
has become a popular method of trying to reduce the risk of dementia, attract-
ing a variety of computerised and internet marketing campaigns (Butcher
2008). The evidence for its efficacy in early dementia is thin, but when person-
alised to the individual, some benefits may be seen (Chapter 6). CR is based on
developing individual goals that are meaningful to the person (Chapters 3 and
22 Early Psychosocial Interventions in Dementia

4) and that assist them to learn new ways of overcoming day-to-day memory
related difficulties (Clare 2008). The Cochrane review on CST is positive,
whilst that on CT and CR remains equivocal.
Equally familiar in many dementia care settings are activities such as remi-
niscence (Schweitzer 1998; Chapter 11), which uses autobiographical
memories. These are often intact in early and moderate dementia. Reinforcing
autobiographical memory in dementia through reminiscence may, like CST,
CT and CR, be categorised as a cognition-orientated treatment. However in
this book we have categorised reminiscence therapy as one that provides psy-
chological and social support (Chapter 11) since:
• it is biased in favour of pleasant events which enhance feelings of
well-being (Walker, Skowronski and Thompson 2003)
• it mostly depends on pleasurable social engagement with others
(Bassett and Graham 2007)
• its expected outcomes, unlike CST, may have a greater impact on
social interaction and quality of life than on cognition.
Although the 2005 Cochrane review did not find a strong evidence base for
reminiscence, an eight-centre cluster randomised trial of couples group remi-
niscence (see also Chapter 11) by Woods and his colleagues is currently
underway in the UK (www.controlled-trials.com/ISRCTN42430123,
accessed 2 August 2008).
The family counselling programme of Mittelman and her colleagues
(2003) in the USA, remains the most longstanding study of psychosocial inter-
vention in dementia, with impressive outcomes reported (Mittelman et al.
2006). Extension of this trial in the Netherlands is currently underway (Joling
et al. 2008) and other similar interventions directed at person–family dyads
have also shown that it is possible to reduce distress in family carers through
early psychosocial interventions and timely ongoing support (see the Seattle
Protocols of Teri et al. 2005; Moniz-Cook et al. 2008a; Chapter 3). The UK
BECCA randomised trial (Chapter 16) of a befriending service for family
carers is also now complete. As noted in the opening paragraphs of this
chapter, provision of individually tailored home-based programmes involving
both the person with dementia and the family (Chapter 3) reflects the zeitgeist,
that is, the state of the art in dementia care practice (Vernooij-Dassen and
Moniz-Cook 2005). A recent example of this from the Netherlands provided
in-home occupational therapy within a randomised trial, demonstrating
positive outcomes on activities of daily living, skills, mood and quality of life
in the person with dementia as well as an improved sense of competence in the
primary family carer (Graff et al. 2006, 2007).
 Introduction: Personalising Psychosocial Interventions 23

These approaches have much in common: they demonstrate a wide menu

of interventions, where in many parts of Europe the skill base is already
well developed. Organisations such as Alzheimer’s Europe and INTERDEM
(contact details at the end of chapter) offer opportunities for people with
dementia, carers, practitioners, educators, researchers and policymakers to
share skills and understandings. Strong traditions of psychology and a history
of community-based practice are features of European health and social care
practice that are sometimes overlooked. This is a workforce that has adapted to
major changes in health and social care provision for people with dementia
and has often stimulated such changes, notably the growing move from institu-
tional care to community or home-based services.
At a time when services are resourced on the basis of rigorous consider-
ation of treatments – such as in the case of pharmacological treatments in
dementia care – it is possible that the next generation of practice developments
may have to justify more explicitly the basis on which psychosocial interven-
tions are delivered since competition for resources within dementia services
will be fierce and common across Europe. The evidence base for early inter-
vention services is small but growing, and likely to be of rising importance as
resources lag ever far behind demand, and when more people with dementia
or their representatives are, in parts of Europe, beginning themselves to
purchase support services. One of the challenges will be to set out the costs as
well as the benefits, to allow commissioners of dementia services to reach
informed choices about what interventions can be afforded, since dementia
services are often under-resourced (Macijauskiene 2007). Cost consequence
studies are emerging for some psychosocial interventions such as group-based
CST in the UK (Knapp et al. 2006) and in-home occupational therapy in the
Netherlands (Graff et al. 2008). The growth in ‘cash for care’ services is re-
markable across developed countries (see Breda et al. 2006) and practitioners
offering psychosocial support will need to be more exact in estimations of
staffing levels and optimum numbers for groups or activities in order that pur-
chasing organisations, individuals and their proxies may properly evaluate the
choices on offer.

Personalising psychosocial intervention

The chapters in this book outline the many psychosocial interventions and
services that are available across Europe and beyond, and their limitations.
What is special about this book is that the interventions are set in the evaluative
tradition of dementia care and its aspirations to listen to the voices of people
with dementia and their carers (see also Innes and McCabe 2007). Each
chapter provides a conceptual basis for the intervention described, a summary
24 Early Psychosocial Interventions in Dementia

of outcomes and a case illustration of how the intervention might be carried

out in practice. Many of the interventions have arisen from randomised trials or
from components of these, where the outcome measures applied in evaluation
can also be used by the practitioner to measure outcomes in routine practice
(Moniz-Cook et al. 2008b). The chapters are also strongly focused at proactive
support to prevent further disability due to cognitive losses in older people.
Therefore many of the interventions described are also applicable to people
who have not yet developed a dementia but require a ‘watching brief ’ over a
number of years (Woods et al. 2003) or have mild cognitive impairments, since
increasingly both pharmacological and psychosocial interventions are being
considered as possible means of delaying the onset of dementia (Tuokko and
Hultsch 2006).
There are three broad categories of early and timely psychosocial inter-
ventions described in this book that can be applied in practice: support at the
time of diagnosis (Chapters 2–3); interventions to enhance cognition and
memory (Chapters 4–8); and interventions to enhance psychological and
social adjustment (Chapters 9–13). These can be used with people with
dementia, or carers, or with both, although matching these to family circum-
stances in early dementia is not straightforward. For example, a recent system-
atic review of combined intervention programmes for people with dementia
living at home and their families (Smits et al. 2007) concludes: ‘Care profes-
sionals must define their programme goals and target groups before advising
their clients’ (p.1181).

Practice issues
In selecting psychosocial intervention(s) to assist the person with early
dementia and/or the ‘carer’, practitioners need to consider a number of issues.
First, the person’s circumstances and wishes should be explored. An assess-
ment framework for psychosocial intervention and rehabilitation in suspected
or early dementia can be found in Moniz-Cook (2008). Selecting the relevant
interventions will usually need a focused assessment combining personal
profile, biography, interests, motivations and relationships for the person with
suspected dementia as well as the close family or other supporters. Increasingly
this may be done jointly or through self-assessment. This should enable the
practitioner or team to work with the person in establishing what outcomes
they wish to achieve and planning this support. Box 1.1, drawn from case
studies in memory clinics and social care settings, illustrates some of the
personal outcomes that people with early dementia may wish to achieve.
 Introduction: Personalising Psychosocial Interventions 25

Box 1.1 Illustrations of individually desired outcomes

‘I want to go on a cruise with my wife’ (William).
‘I want to get the garden in good shape for when I won’t be
able to do it any longer’ (Maurice).
‘I don’t want to be a trouble to anyone…especially my
family’ (Lily).
‘I would like to be always clean – not to smell…that would
be very upsetting’ (Kathleen).
‘I hope that I can work out a system, will you help me with
this, so that I don’t upset my wife by always losing things. If
she gets upset, then I get upset, and where will this end?’
(Patrick).
‘If I can continue to look after my home, baking…for my
daughter, granddaughter friends and loving my daughter
– thinks I am doing too much…baking for others… Just for
a while anyway…that’s what I would like most’ (Emily).

Next the practitioner will need to consider how to arrange or plan the support
offered, selected on the basis of possible options such as follows:
• Individually based support, often applied during visits to the
family home or in outpatient clinics (as in Chapters 3, 4, 6, 8, 10,
11 and 15).
• Group-based support (as in Chapter 3, see post-diagnosis family
workshops; Chapters 5, 7, 9 and 11 for couples group-based rem-
iniscence; Chapters 12, 13 and 14), or the couples memory club
intervention (Zarit et al. 2004).
• Inclusion of the family carer in the intervention with the person
(Chapters 3, 4, 8, 11, 14, 15; Zarit et al. 2004); or support offered
to the person or the carer in the absence of the other (for the
person see Chapters 3, 4, 5, 6, 7, 8, 9, 10, 11 – where treatment is
provided by supervised volunteers or therapists – and Chapter 12;
for the carer see Chapters 13 and 16); or offering separate parallel
group support to the person and the carer such as the meeting
centres approach (Chapter 14) and the memory club, where
26 Early Psychosocial Interventions in Dementia

opportunity to meet jointly as well as separately was offered (Zarit

et al. 2004).

Group-based psychosocial intervention

Apart from Cognitive Stimulation Therapy and more recently Reminiscence
Therapy, the evidence base for other types of group intervention is not strong.
However the potential for this to develop in the future exists (Chapter 9; see
Scott and Clare 2003 for a review). The decision to develop psychosocial
group intervention programmes for people themselves (Chapter 9) or for
family carers (Chapter 13) will remain a challenge for practitioners and service
funders. In establishing the method, type and setting of group support, the
practitioner will need to consider whether:
• by offering group-based support to the person or ‘carer’, where
the latter may not actual perceive himself or herself as a ‘carer’,
they might inadvertently undermine the natural established rela-
tionship(s) that have acted as the cornerstone for many successful
psychosocial intervention programmes (see Chapter 3 and the
Seattle Protocols of Teri et al. 2005)
• to offer gender-specific or culturally specific opportunities of
group support (see Chapter 12; Lees 2006; Rainsford and Waring
2005)
• to develop groups for younger or older people with dementia or
more widely (Burgess 2005; Randeria and Bond 2006)
• to offer joint person–carer groups, or whether these should be run
in parallel but separately for person and carer (Rainsford and
Waring 2005; Scott et al. 2002)
• the group should be time limited (Chapter 12) or provide
long-term support (Randeria and Bond 2006); time-limited groups
are often difficult to end (Bender 2006) probably due to new
social relationships that develop)
• the group setting should be clinically based (Bender 2006;
Rainsford and Waring 2005; Randeria and Bond 2006) or
voluntary sector based (Burgess 2005; Pratt, Clare and Aggarwal
2005).
Decisions will depend on the function of the intervention and local resources,
which will need to be discussed with the person and/or the ‘carer’.
 Introduction: Personalising Psychosocial Interventions 27

Targeting psychosocial interventions:

towards unravelling complexity
To date research in dementia care has little systematic advice to offer the practi-
tioner in how to select psychosocial intervention(s). Furthermore, it is not
known whether group-based support is more effective than individualised
home-based support in maintaining quality of life by delaying distress and as-
sociated burden, for both the person with dementia and the family. In this final
section we will use the current and emerging evidence base outlined above
(and in the first three parts of this book), to suggest stepped principles for the
selection of psychosocial intervention in early dementia.
For detailed background in assessment for psychosocial intervention in
early dementia, the reader is referred to Moniz-Cook (2008), which draws
from knowledge and experience of older people and their families at the point
of recognition and includes the individual and sometimes distinct psychologi-
cal strengths and needs of both. For example, where an intervention is offered
too early, this may exacerbate support needs; or in-home individualised early
intervention increased carer anxiety over the three months of one intervention,
but when pleasurable activity was added, longer term distress and burden were
less (Chapter 3).
As a starting point to our framework for selecting evidence-based inter-
ventions in early dementia, we return to our previous discussion on the role of
attitudes – sometimes underpinned by stigma – in the development and uptake
of psychosocial services in early dementia. To counteract this we suggest that
interventions should be guided by social models of disability, with the disease
model restricted to descriptions of specific neurological impairments (Chapter
3). This perspective allows the practitioner to intervene to promote health and
well-being and thus prevent or minimise the extra disability of distress and
reduced mood in older people with suspected dementia and their families. To
achieve this by personalising intervention to need and context, we suggest the
following stepped care framework for psychosocial interventions in early
dementia:
• Step 1 interventions should use the time of diagnosis as an opportu-
nity to address stigmatised attitudes and provide methods of
promoting health and well-being in early dementia (Chapters 2,
3). Diagnostic disclosure programmes are developing (Derksen et
al. 2006) as are methods to address fears by focusing on strengths
and abilities (Chapter 3). A general principle would be: to promote
in-home cognitive rehabilitation or training (Chapters 3, 4, 6) or
provide technologies (Chapter 8) to enhance a sense of control
over memory; to reinforce usual family and social support
28 Early Psychosocial Interventions in Dementia

networks and associated activities (Chapter 3, 16); to involve,

where possible, both the person and the family ‘carer’. Reminis-
cence activity (Chapter 11) can also be another means of strength-
ening family relationships.
• Step 2 interventions include evidence-based groups that are prophy-
lactic in nature in that they do not target those that are already
distressed. They will best suit people with early dementia and their
families who do not have adequate opportunity for mental stimu-
lation and social activity and valued friendships in their natural
environment. Evidence-based groups include Cognitive Stimula-
tion Therapy (Chapters 5, 6, 7) and Reminiscence Therapy
(Chapter 11).
• Step 3 interventions are those described under the social inclusion
umbrella, where a strong focus on opportunity for social engage-
ment and voluntary sector support in communities is the norm.
These interventions – such as the ‘Alzheimer’s Café’ (Campus
2005; Miesen and Blom 2001) – tend not to be time limited and
offer the opportunity for the shared experience of having dementia
to reinforce social identity. We suggest that some of the difficulties
encountered when time-limited groups have to end their
programmes, including those in Step 2, may be overcome by
having in place a regular (perhaps monthly) Alzheimer’s Café to
allow people and their families to maintain their social contact and
support of each other. In some early dementia care services, Alz-
heimer’s Cafés appear to act as the only post-diagnosis ongoing
support service alternative to anti-dementia drug treatment
(Thompson 2006, p.295). Alternatively, where social relationships
have been undermined by the effects of dementia, as is common in
younger people who develop dementia, or people have become
socially isolated for some other reason and Step 1 intervention is
not possible, structured support to engage in services for people
with dementia such as the Talking About Memory Coffee Club
(Pratt et al. 2005) or internet-based social support may be consid-
ered.
• Step 4 interventions include individual and group therapy for the
person with dementia who may be distressed and require support
to adjust to the knowledge of having dementia or to recover their
sense of self-identity (Chapters 9, 10; see Moniz-Cook 2008 for
 Introduction: Personalising Psychosocial Interventions 29

examples of psychological treatments for distress in early

dementia). This category may also include:

° group support to enhance competence and/or social support

or pleasure for the person with dementia or the ‘carer’
(Chapters 11, 12, 13)

° individual social support for either the person or the ‘carer’

through befriending schemes (Nicholson 2005; Chapter 16)

° personal counselling, treatment and supportive intervention

for the ‘carer’, where ongoing service support systems (Part
IV) become important in sustaining positive outcomes over
time.
Table 1.2 summarises guidance for assisting practitioners to make informed
choices on what interventions might be appropriate to offer people with early
dementia and families, taking into account their personal and in some cases
differing needs.

Conclusion
The four parts of this book are unified by their focus on the requirement that
interventions and services should be personalised to outcomes, need and
context. While we accept the importance of models of disability and organisa-
tional systems, the authors frequently return to emotions, worries and
concerns of people and their families, probably because most are research prac-
titioners who are in frequent contact with people with dementia and their
supporters. Organisational and service contexts will remain important, as is
highlighted by the multidisciplinary background of chapter contributors who,
as can be seen in Part IV of this book, often work across settings and bound-
aries. Finally, our pan-European theme, wherein practitioners and researchers
have accepted the challenge to describe their service and activities to readers
who may be unfamiliar with particular national contexts, has the potential for
raising the quality of responses to dementia across countries. As in the case of
the psychosocial interventions of Mary Mittelman from New York, now being
tested in the Netherlands, chapter contents may be drawn upon and trans-
ferred to other countries across Europe and beyond. This inter-nation commu-
nication enabled the genesis of this book, when a multiprofessional group of
individuals discovered that there was more that united than divided them in
their aspirations to support people with early dementia and their families.
These conversations led to a thriving multiprofessional European research
practice network INTERDEM, which continues to inspire, communicate and
 Table 1.2 Guidelines for choosing psychosocial intervention
BOOK AIM TASKS OF GUIDELINES
SECTION INTERVENTION
Support Neutralise To separate Provide person and the carer with verbal and written information on retained aspects of cognition, how areas of deficit might impact on
around stigma ‘brain from mind’ everyday living and what they might do to overcome the subtle changes in function that they experience (Chapter 3).
diagnosis
To address myths Address issues of uncertainty, possible concerns of family members and/or health and social care professionals surrounding ‘how to tell’
/rehabilitative a diagnosis. Discussion should focus on understanding the meaning of dementia for the person and for family members or other
nihilism supporters and providing them with information, options and avenues to overcome fear or nihilistic views about maintaining well-being
and quality of life (Chapter 2; see also Moniz-Cook 2008). Consider opportunities for psychosocial intervention (Chapter 2).
Use the discussion to negotiate interventions (from the tool kit in Sections 2–4) that might minimise the risks of anxiety, depression,
disability or distress for both the person and the primary supporting family member. Consider with caution out-of-home structured group
activity such as cognitive stimulation (Chapter 7), therapy (Chapters 9, 10, 12, 13) unless the person or carer is unduly distressed or
whether attending a ‘class’ is perceived as meaningful (see below).
Cognition- Individualis- To enhance Where a high need for cognitive control and a belief in the ‘use it or lose it’ hypothesis is observed, consider establishing cognition
focused ing the control and maintaining strategies (Chapter 3), cognitive rehabilitation or training (Chapters 4, 6), or technology if available (Chapter 8) to address
intervention intervention minimise worry in meaningful personal rehabilitative goals or in-home cognitive stimulation (Onder et al. 2005).
to prevent the person with
‘excess dementia
disability’
Where previous participation in adult education classes or activity in group-based facilities is noted and a person is not shy and
therefore likely with encouragement to engage in group activity, consider offering structured time-limited group cognitive stimulation
(Chapters 5, 7).
Discuss with person and carer the pros and cons of introducing for the first time crosswords or other mental activity that may not be of
value or pleasure. Caution against automatic use of crosswords ‘testing’ the relative with dementia during a memory lapse, as a means
of training or stimulation.
Psychological To support the Generally involving the carer is beneficial to both (Chapters 3, 4 and see Onder et al. 2005). Where families are distressed at subtle
and social distressed carer changes in their relative, avoid their initial involvement in cognition-orientated programmes and consider in-home or group-based
support reminiscence (Chapter 11).
To support the Offer carer counselling or support (Chapters 13, 16); or take a co-ordinated Meeting Centre approach (Chapter 14) where the person
distressed person may participate in group cognitive stimulation or in developing personal support outside the family (Chapters 5, 7, 12) whilst the relative
and/or carer receives group-based support (Chapter 13).
 Managing To provide Where anxiety and distress about ‘losing their mind’ is noted, consider individual therapy (Chapter 10), group therapy (Chapter 9) or
distress psychosocial supported behavioural activation to prevent depression (Chapter 3).
treatment to
minimise/reduce
distress
If anxiety is not high but subtle social withdrawal from pleasurable social contacts or activities is a risk, consider individual support to
re-engage in pleasurable activity through cognitive rehabilitation (Chapter 4) or behavioural activation (Chapter 3) or through provision
of new opportunities for pleasurable group resocialisation (Chapter 12).
For younger people with dementia avoid premature reminiscence activity. Consider psychotherapy (Chapters 9, 10), group support
(Chapter 12) or individual counselling (see Moniz-Cook 2008).
Sustaining strong Consider family-supported reminiscence as a tool for identity maintenance activity and also for engaging in pleasurable activity (Chapter
family 11).
relationships
Establishing Maintaining Preventing Consider in most cases support for both parts of the person–carer dyad (Chapters 14, 15) or the carer alone (Chapters 13, 16).
supportive the effects of burden and
services early maintaining
intervention long-term quality
of life
Where there are strong fears of dementia or evidence of ‘protective care-giving’ (Gillies 1995) consider offering couples or family-based
workshops (Chapter 3) and reminiscence (Chapter 11).
32 Early Psychosocial Interventions in Dementia

develop new psychosocial research in dementia care. Our aspiration is that the
contents of this book will further extend these conversations and that this
book will offer something for those who echo the call of practitioners and
people with early dementia across Europe, epitomised by a recent call from
France: ‘We need multi-component interventions to effectively slow down the
disablement process’ (Jacques Touchon, neurologist, in interview with
Dorenlot, 2007, p.11).

Note
1 In this chapter families, spouses, partners and relatives have sometimes been referred to as
‘carers’ with deliberate quotation marks, since at recognition/diagnosis and the years that
can precede this neither they nor the person with suspected dementia may perceive them as a
carer. In subsequent chapters we have, for ease, used the term carer without parentheses.

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Related Cochrane protocols and reviews

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Reviews, Issue 4. Chichester: Wiley.
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older people and people with mild cognitive impairment. (protocol).’ In The Cochrane Library
Database of Systematic Reviews, Issue 4. Chichester: Wiley.
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people with dementia (protocol).’ In The Cochrane Library Database of Systematic Reviews, Issue 2.
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with dementia. (review).’ In The Cochrane Library Database of Systematic Reviews, Issue 2. Chichester:
Wiley.
36 Early Psychosocial Interventions in Dementia

Woods, B., Spector, A., Prendergast, L. and Orrell, M. (2005) ‘Cognitive stimulation to improve
cognitive functioning in people with dementia (protocol).’ In The Cochrane Library Database of
Systematic Reviews, Issue 4. Chichester: Wiley.

Resources and further reading

Bender, M. (2004) Therapeutic Groupwork for People with Cognitive Losses: Working with People with
Dementia. Milton Keynes: Speechmark.
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Sage.
Spector, A., Thorgrimsen, L., Woods, B. and Orrell, M. (2006) Making a Difference: An Evidence-based
Group Programme to offer Cognitive Stimulation Therapy (CST) to People with Dementia. The Manual for
Group Leaders. London: Hawker Publications.
Woods, R.T. and Clare, L. (2006) ‘Cognition-based Therapies and Mild Cognitive Impairment.’ In
H.A. Tuokko and D.F Hultsch (eds) Mild Cognitive Impairment: International Perspectives. New
York, NY: Taylor and Francis.
Woods, R.T. and Clare, L. (2008) ‘Psychological Intervention and Dementia.’ In R.T. Woods and L.
Clare (eds) Handbook of the Clinical Psychology of Ageing, 2nd edn. Chichester: Wiley.
 PART I

Support at the Time

of Diagnosis
Chapter 2

What Do We Tell People

with Dementia about
Their Diagnosis and
How Do We Tell Them?
Hilary J. Husband

Overview
Giving someone the news that they have dementia is understandably some-
thing that many professionals find difficult to do. The person may feel a sense
of loss, of stigmatism, and of hopelessness as a result. Coupled with this is the
complication that a definite diagnosis may be problematic for some individu-
als. It is a recent development that health care professionals now consider
telling the person their diagnosis, and this chapter explores issues facing both
professionals and carers. A case example is also described, which highlights
the advantages of early disclosure.
It feels as though my brain is being taken away, bit by bit. I get scared, and
then I remember it’s this Alzheimer’s disease. (Kathryn, a 72-year-old
woman with dementia)
Dementia is one of the disorders that people most dread, especially the old,
who are at most risk of its development. It is a disorder that carries a social
stigma, is progressive and is associated with increasing dependency on others.
It is also a disorder in which an individual’s very sense of their self can be grad-
ually eroded. It is perhaps not surprising that health professionals, who are
only too aware of the losses inherent in dementia, find it difficult to talk to
people about the experience.

39
40 Early Psychosocial Interventions in Dementia

The person-centred approach to dementia care identifies the ‘malignant

social psychology’ that attaches itself to the condition. This includes attitudes
from caregivers that serve to disempower the person with dementia and to un-
dermine their sense of personhood (e.g. Kitwood 1997). This process can start
very early in the course of dementia if it is assumed that people cannot be told
what is causing the problems they have with their memory and other cognitive
functions. If no one explains what is happening to them, they cannot express
their wishes about their care and cannot be helped to understand their own
situation.

How has the situation changed?

We used to sweep all that sort of thing, mental problems and that, under the
carpet, but not now. Now you talk about it. (Ron, a 78-year-old man who
cares for his wife who has dementia)
The question of whether to tell people with dementia about their diagnosis has
only recently been considered by health professionals in the UK. Whilst we
accept that carers should be as fully informed as possible about dementia, there
is considerably less certainty about informing people with dementia them-
selves. The issue has become more pressing as people are presenting earlier to
services, when cognition is less impaired and it is easier to engage in discussion
of diagnostic issues. The improved public awareness of dementia is a major
factor in earlier presentation. Expectations of information giving from health
professionals may also have changed in favour of greater openness.
The situation with dementia parallels that of cancer diagnoses in the
1960s, when a study found that 90 per cent of physicians did not normally
inform patients they had cancer. It was felt the diagnosis was too hopeless and
distressing, which would result in patients ‘giving up’ and perhaps becoming
suicidal (Oken 1961). By 1979 the situation had reversed, with over 90 per
cent of physicians being in favour of telling the patient the diagnosis whenever
possible (Novak et al. 1979). Perhaps, as a result, the considerable stigma once
surrounding cancer has now almost disappeared. It is noted by Novak et al. that
most reluctance to disclose was expressed where the patient was old, of lower
educational level and considered to have low intellectual ability. This suggests
interesting parallels with people with dementia, who are mainly old, who as a
cohort may have had little educational opportunity and whose cognitive
impairments can make them appear less able.
There are, of course, important ethical principles to consider including the
patient’s ‘right to know’ as well as that of withholding information to prevent
harm (Gillon 1985). Health professionals and carers have reasonable concerns
 What Do We Tell People with Dementia about Their Diagnosis? 41

that learning a diagnosis may lead to distress, stigmatisation and depression,

although there is little empirical evidence to support this view (Meyers 1997).
In terms of not telling the diagnosis the following arguments need to be
considered:
• The diagnosis may be wrong.
• The diagnosis may be uncertain.
• There may be no treatment to offer.
• The individual may be unable to understand or remember infor-
mation.
• The individual may refuse to accept, or deny the diagnosis.
• The diagnosis may be too distressing, leading to depressive with-
drawal or suicide risk.
There are also good reasons why people should be told their diagnosis:
• They may ask to be told.
• They may already suspect the diagnosis.
• They can be consulted about decisions relating to their care.
• They have a framework for understanding their problems.
• They can talk openly to carers so secrecy and exclusion are
avoided.
• They may wish to make a will, an advance decision or address
family issues whilst still able to do so.

How many people with dementia are told

their diagnosis?
Mum kept crying and asking what was wrong with her. The nurse said just
to tell her she had a memory problem. (Karen, a 37-year-old woman whose
mother has dementia)
It is difficult to obtain a valid estimate of the proportion of people with
dementia who learn their diagnosis. Most studies are surveys relying on
self-report of attitudes and behaviour. People answering questionnaires may
have poor recall of events, may underestimate or overestimate aspects of their
behaviour, or may give the response they feel is most socially desirable. It
would be very difficult to observe directly what people said about dementia to
42 Early Psychosocial Interventions in Dementia

people with the condition, as the very act of being observed can alter behav-
iour. The population of people with dementia is diverse, and little is known of
the characteristics of those who are told their diagnosis in comparison to those
who are not.
A number of studies in the 1990s attempted to examine the question of
just how often health professionals did disclose a dementia diagnosis. A study
of consultant old age psychiatrists found that nearly half, 48 per cent, said they
would tell somebody with mild dementia, in about 80 per cent of cases. Where
dementia was more severe, only 10 per cent would consider telling the diagno-
sis. This suggests that less than half of those with mild dementia learn their di-
agnosis from a consultant. All of the respondents in this study reported that
they told the carers of the diagnosis at all times (Rice and Warner 1994). A
study of GPs found that 5 per cent reported they always told people their diag-
nosis, 34 per cent often told the diagnosis and 42 per cent occasionally told
the diagnosis, again suggesting diagnosis is often withheld (Vassilas 1999).
A study of 20 memory clinics, where they specialise in diagnosing
dementia, found that only 45 per cent of clinics reported that they discussed
diagnosis with patients and only 37.5 per cent had any written guidelines on
the issue (Gilliard and Gwilliam 1996). Given that memory clinics are centres
of expertise, the neglect of disclosure issues is surprising.
It is not always a health professional who tells the person with dementia
their diagnosis. A study of 42 carers found that in only two cases had a health
professional told the person with dementia the diagnosis. A further nine carers
(21.4%) had imparted the diagnosis themselves but only four carers (9.5%)
had received any guidance or advice from a health professional on this issue
(Husband 1996). A further study of carers comparing disclosure in early and
late onset dementia found 48 per cent of people with dementia overall were
told their diagnosis. There was no overall difference in rates of disclosure for
younger and older people with dementia, but health professionals were signif-
icantly more likely to tell younger people than older people (Heal and
Husband 1998).

Why do carers choose to tell or not to tell?

How can you tell him something like that? He was always such a proud
man, it’s like telling him he’s on the scrap heap, it would break him com-
pletely. (Joan, a 70-year-old woman caring for her husband who has
dementia)
The most common reasons given by carers for telling the person with
dementia their diagnosis are that the person had asked, and to provide an ex-
 What Do We Tell People with Dementia about Their Diagnosis? 43

planation for their experiences. Withholding information occurred when the

carer felt disclosure would cause distress, such as anxiety, depression or anger.
Another major reason was that the person with dementia was too cognitively
impaired to understand. A small number of carers may believe that the diagno-
sis was wrong (Heal and Husband 1998; Husband 1996). It has been sug-
gested by Meyers (1997) that it is important for people to know the diagnosis
so as to be able to ‘set their affairs in order’ by making a will, an advance
decision or drawing up a lasting power of attorney.
There are interesting differences in people’s attitudes to disclosure in
relation to themselves and others. A study in a memory clinic found that 83 per
cent of people attending with a relative did not wish that relative to be told of a
dementia diagnosis. However, 71 per cent would wish to know if they them-
selves were to develop dementia (Maguire et al. 1996). In a study of cognitively
intact adults in a primary care setting, almost all, 91.9 per cent, indicated they
would wish to be told if they were diagnosed with a dementia disorder (Erde,
Nadal and Scholl 1988). The Heal and Husband study (1998) found that 58
per cent of carers would wish to know if they were diagnosed with dementia,
with a further 15 per cent being unsure. The 58 per cent of carers were signifi-
cantly more likely to have disclosed the diagnosis to the person they cared for.
Carers need to be consulted where possible about disclosure issues, even
though a health professional may have to override their wishes, for example
when the person with dementia expresses a desire to talk about the diagnosis.
Few carers get the opportunity to discuss the pros and cons of disclosure with a
health professional. Where professionals have told the diagnosis, in about 8
per cent of cases the carers felt the outcome of this was negative, in particular
when it resulted in angry denial and accusations of betrayal. It is important to
remember that it is the carer, not the health professional, who will live with the
consequences of disclosure.

How do people cope with knowing they

have dementia?
It is really important for me to know what is going on, I want doctors to tell
me what is happening, I want to have a voice, not be treated as though what
I have to say does not matter. (Vera, a 66-year-old woman with a diagnosis
of Alzheimer’s disease)
Being told that one has dementia is a major negative life event. The person
with dementia has to cope not only with their fears in relation to the course of
the disorder but with the stigma attached to the dementia label. We should
44 Early Psychosocial Interventions in Dementia

expect anxiety and preoccupation, some degree of adaptation reaction being

essentially normal.
It should be recognised that diagnostic disclosure is not an event, but a
process. By the time the diagnosis is made it should be a matter of confirming
to an individual that they have dementia, rather than it being a ‘bolt from the
blue’. This process should begin as soon as the person presents to services.
Probing questions should be asked to ascertain the degree to which the person
suspects or fears they have dementia, their understanding of what is happening
to them and the importance they attach to it. People may need repeated oppor-
tunities to talk about these things and often do not disclose their fears until a
trusting relationship has been established. When people deny or minimise
their problems it is particularly important to discuss this with relatives, to get
their view on the person’s level of insight and desire to be given information.
Health professionals need to ensure they do not collude with minimisation
and to explain what tests such as neuropsychological assessment and MRI
scans can and cannot show.
A small study of ten newly diagnosed people found that the most promi-
nent worry in relation to the diagnosis was other people finding out (Husband
2000). They described fears of being pitied, feeling ashamed and humiliated
by the diagnosis and others laughing at them. This was related to equally
prominent fears of letting oneself down in public. People were worried they
might do something embarrassing, appear stupid, incompetent or boring.
Fears were also expressed at the prospect of increasing disability and being a
burden on others. Of the sample, seven people feared that they would no
longer be consulted and decisions would be made for them. They thought that
others would think they were incapable of knowing what they wanted. Partic-
ipants also had individual worries, such as the woman who lived in an isolated
rural village and had been told she must stop driving and the man who feared
his younger wife would leave him.
The response to the need to maintain secrecy was in all cases a restriction
of social activity. People ceased previously enjoyed social activities and
avoided all but close friends. This was particularly the case for activities where
a skill was being used such as singing in a choir or taking minutes at a meeting.
Relatives and close friends were asked to maintain secrecy. People described
avoiding situations where their dementia was known about, such as doctors’
surgeries and hospitals. A second common effect was for people to become
hypervigilant about their own memory function. Memory lapses tended to be
maximised and successes minimised. Any lapse increased anxiety and
provoked catastrophic thoughts about progression. The negative effects of
anxiety on memory function are well known: the more anxious the person, the
worse their memory.
 What Do We Tell People with Dementia about Their Diagnosis? 45

On the positive side people who learned their diagnosis reported some
relief at knowing there was an explanation for their problems. Some had
wondered if they were ‘going mad’ or imagining the problem. People reported
that it helped to focus on short-term goals and over half were using ‘alternative
remedies’ such as ginko biloba (prescription drugs for slowing the course of
dementia were unavailable in the area at the time this study was done). Being
able to talk to close friends or family about what they would like for the future
was also reassuring for most people.

Does telling the diagnosis present an

opportunity for intervention?
I used to get so wound up if I couldn’t do something, I would sit and cry as if
it was the end of the world. Now I make myself go in the garden, walk away
and come back later. What does it matter if I can’t bake a cake? Anyway,
when I’ve calmed down I can often do it. (Joan, a 69-year-old woman with
dementia)
One issue that must be addressed as we move toward a more open approach to
disclosure is the availability of support post diagnosis. Until recently there has
been an almost complete absence of counselling available for those newly di-
agnosed with dementia. Although the needs of people with dementia and
their carers for information, advice and emotional support may overlap, it must
be acknowledged that separate needs may also exist.
Not everybody with dementia needs individual counselling, but they do
need information about their condition, including sensitive discussion of the
prognosis. They need to understand how their cognitive problems affect daily
life, and consider simple strategies to minimise the impact of these problems.
They may need to discuss worries about driving or other independence issues.
There are questions relating to what to tell other people and coping with social
situations. There may be issues relating to finance or benefit entitlement.
Of equal importance are the emotional issues. How can people be helped
to maintain their self-esteem and feelings of self-efficacy after the diagnosis is
made? People with dementia have to cope with the loss of independence and
competence and face increasing dependency. Support and encouragement are
needed to help people focus on the things they can still enjoy, to derive a sense
of achievement and to challenge their own self-stigmatising beliefs. For those
who become anxious and depressed, individual or group therapy tailored to
their specific needs may be considered (see Chapters 7 and 9 of this book).
Despite assumptions that cognitive impairment presents too great an
obstacle to engagement with, or understanding of, the therapeutic process,
46 Early Psychosocial Interventions in Dementia

psychological approaches have been used for people with dementia. An ex-
ploratory study using cognitive behaviour therapy with people with mild to
moderate dementia in the USA found it useful in overcoming depressive with-
drawal and catastrophisation (Teri and Gallagher-Thompson 1991;
Thompson et al. 1990). The issues of loss and grieving have been usefully ad-
dressed by psychodynamic psychotherapy (e.g. Hausman 1992; Solomon and
Szwabo 1992). Support groups for people with dementia and counselling
about diagnosis are becoming more commonly available in western societies
(Barton et al. 2001; Hawkins and Eagger 1998; Yale 1998). Recent work has
demonstrated the potential benefits of cognitive behavioural therapy to
enhance mood and psychosocial adjustment and cognitive rehabilitation to aid
adaptation and adjustment to cognitive decline (Clare et al. 2000; Clare and
Woods 2001; Husband 1999; Kipling, Bailey and Charlesworth 1999). A
review paper by Cheston (1998) discusses the issues raised for therapists using
psychological approaches with people with dementia (see Chapter 9 of this
book).

Case example – Jacquie

Jacquie was referred to services at the relatively young age of 57 years
complaining of problems with her memory and organisational skills.
She worked full time as a practice nurse at a busy rural health centre and
was having problems with managing computer records, the
administration of clinics and remembering personal information about
her patients (such as the names of their children or their jobs). She had
recently found immense difficulty preparing the Christmas dinner for her
extended family, despite this being a task she had managed very
successfully for years. She was anxious she might make a mistake at
work and so had taken sick leave.
Jacquie initially believed she might have a brain tumour although
the neurological investigations quickly ruled this out. When she received
a diagnosis of Alzheimer’s disease she described herself as ‘only half
prepared’. Her first action was to resign from her job by letter, sending
her husband to collect her belongings. She was firmly of the opinion that
she did want to know her diagnosis, but felt she had been told in an
insensitive way which did not encourage information seeking, or offer
any hope or reassurance. She had not told either of her sons or any other
friends and family about the diagnosis and was avoiding social contact
whenever possible. She had been offered a trial of the anti-dementia
drug donepezil, but was undecided about this as she felt there was no
point. She described an inability to enjoy anything, lack of motivation
and a feeling of numbness. She made a new will, an advance decision
and drew up a lasting power of attorney shortly after hearing the
diagnosis.
 What Do We Tell People with Dementia about Their Diagnosis? 47

Jacquie was referred for some psychological intervention to help

her manage the impact of the diagnosis. She initially presented with
profound feelings of hopelessness with well-elaborated fears for the
future. She experienced frequent intrusive thoughts and imagery about
being in a residential care home, highly distressed, in an advanced state
of dementia. She also described feelings of anger and ‘why me?’ She felt
distressed whenever she thought about the diagnosis or was reminded
of it in any way. She had refused antidepressants.
The aim of the intervention was to explore Jacquie’s understanding
of dementia, her responses to the diagnosis and to help her to develop a
coping framework. She was encouraged to explore her thoughts and
beliefs about dementia, for example, her ideas about long-term care
being imminent and necessarily distressing. She was helped to find out
about her condition and in doing so realised that it could be many years
before she reached that level of disability. She had some misinformation
stemming from past experience as a nurse many years ago. It was
suggested to her that we needed to develop a collaborative plan aimed
at keeping her functioning as well as possible for as long as possible. It
was at this point that she decided taking donepezil could be a useful part
of an overall coping strategy. A Mini Mental State Examination carried
out before commencement of drug therapy yielded a score of 30/30,
which she found reassuring (Folstein, Folstein and McHugh 1975).
Jacquie had to learn to manage her own level of activity and
demand. If she set the social and intellectual demands of her daily
schedule too high, she became very tired and was failure prone. Too
low, and she experienced boredom, frustration and ‘feeling stupid’. It
was suggested that sharing the diagnosis with other family members and
close friends could be a good thing, as trying to cover up cognitive
problems was exhausting and led to social withdrawal. She was
encouraged to pace her activities and not cram too much into one day,
to carry out one task at a time and to spend time planning her activities.
She was asked to continue activities she knew she could manage,
particularly if they were sources of enjoyment. She also recorded
activities she was finding difficult and we identified what help she would
need were she to continue to do them. Her husband joined in some of
these sessions as he was usually the ‘help provider’. Finally, it was
suggested she join the local younger people with dementia group run by
the Alzheimer’s Society.
Jacquie gradually felt less catastrophic about her diagnosis and that
she had more control over her well-being. She still feared for the future,
but these fears were more realistic and less overwhelming. She
responded well to the donepezil and intended to continue with it for as
long as it proved useful. The elements of the intervention described here
are mainly based on a simplified version of cognitive behaviour therapy
(Beck et al. 1979).
48 Early Psychosocial Interventions in Dementia

Conclusion
Being open with people about diagnosis presents a real opportunity for health
professionals to intervene early, both to prevent problems and to help with
problems as they arise. Improving our dialogue with people with dementia
allows us to think and respond more appropriately to the challenges of
dementia care. It is to be hoped that establishing openness and trust early on
will facilitate good future relationships with services. We now need more
research to look at the impact of counselling or psychological therapy over the
longer term, and to examine the processes within interventions that are
helpful.

References
Barton, J., Piney, C., Berg, M. and Parker, C. (2001) ‘Coping with Forgetfulness Group.’ PSIGE –
Psychology Specialists Promoting Psychological Wellbeing in Late Life – Newsletter 77, 19–25.
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York, NY: Guilford Press.
Cheston, R. (1998) ‘Psychotherapeutic work with people with dementia: a review of the literature.’
British Journal of Medical Psychology 71, 211–231.
Clare, L., Wilson, B.A., Carter, G., Breen, E.K., Gosses, A. and Hodges, J.R. (2000) ‘Intervening with
everyday memory problems in dementia of the Alzheimer’s type: an errorless learning approach.’
Journal of Clinical and Experimental Neuropsychology 22, 132–146.
Clare, L. and Woods, R.T. (2001) Cognitive Rehabilitation in Dementia. Hove: Psychology Press.
Erde, E., Nadal, E. and Scholl, T. (1988) ‘On truth telling and the diagnosis of Alzheimer’s disease.’
Journal of Family Practice 26, 401–406.
Folstein, M.F., Folstein, S.E. and McHugh, P.R. (1975) ‘Mini-mental state: a practical method for
grading the cognitive state of patients for the clinician.’ Journal of Psychiatric Research 12,
607–614.
Gilliard, J. and Gwilliam, C. (1996) ‘Sharing the diagnosis: a survey of memory disorders clinics, their
policies on informing people and their families and the support they offer.’ International Journal of
Geriatric Psychiatry 11, 1001–1003.
Gillon, R. (1985) ‘Telling the truth and medical ethics.’ British Medical Journal 291, 1556–1557.
Hausman, C.D. (1992) ‘Dynamic Psychotherapy with Elderly Demented Patients.’ In G. Jones and B.
Mieson (eds) Caregiving in Dementia. London: Routledge.
Hawkins, D. and Eagger, S. (1998) ‘Group therapy: sharing the pain of diagnosis.’ Journal of Dementia
Care 6, 12–14.
Heal, H.C. and Husband, H.J. (1998) ‘Disclosing a diagnosis of dementia: is age a factor?’ Aging and
Mental Health 2, 144–150.
Husband, H.J. (1996) ‘Sharing the diagnosis – how do carers feel?’ Journal of Dementia Care 4, 18–20.
Husband, H.J. (1999) ‘The psychological consequences of learning of a dementia diagnosis: three
case examples.’ Aging and Mental Health 3, 179–183.
Husband, H.J. (2000) ‘Diagnostic disclosure in dementia: an opportunity for intervention?’ Inter-
national Journal of Geriatric Psychiatry 15, 544–547.
Kipling, T., Bailey, M. and Charlesworth, G. (1999) ‘The feasibility of a cognitive behavioural
therapy group for men with mild/moderate impairment.’ Behavioural and Cognitive Psychotherapy
27, 189–193.
Kitwood, T. (1997) ‘The experience of dementia.’ Aging and Mental Health 1, 13–23.
Maguire, C.P., Kirby, M., Coen, R., Coakley, D., Lawler, B.A. and O’Neil, D. (1996) ‘Family
members’ attitudes toward telling the patient with Alzheimer’s disease their diagnosis.’ British
Medical Journal 314, 375–376.
Meyers, B.S. (1997) ‘Telling patients they have Alzheimer’s disease.’ British Medical Journal 314,
321–322.
Novak, D.H., Plumer, R., Smith, R.L., Ochitill, H., Morrow, G.R. and Bennett, J.M. (1979) ‘Changes
in physicians’ attitudes toward telling the cancer patient.’ Journal of the American Medical
Association 241, 897–900.
Oken, D. (1961) ‘What to tell cancer patients.’ Journal of the American Medical Association 175,
1120–1128.
 What Do We Tell People with Dementia about Their Diagnosis? 49

Rice, K. and Warner, N. (1994) ‘Breaking the bad news: what do psychiatrists tell patients with
dementia about their illness?’ International Journal of Geriatric Psychiatry 9, 467–471.
Solomon, K. and Szwabo, P. (1992) ‘Psychotherapy for People with Dementia.’ In J.E. Morley, R.M.
Coe, R. Strong and G.T. Grossberg (eds) Memory Functions and Ageing Related Disorders. New York,
NY: Springer.
Teri, L. and Gallagher-Thompson, D. (1991) ‘Cognitive behavioral intervention for the treatment of
depression in Alzheimer’s patients.’ Gerontologist 31, 413–416.
Thompson, L.W., Wenger, G., Zeuss, J.D. and Gallagher, D. (1990) ‘CBT with early stage
Alzheimer’s Disease Patients: An Exploratory View of the Utility of this Approach.’ In E. Light
and B.D. Lebowitz (eds) Alzheimer’s Disease – Treatment and Family Stress. New York, NY:
Hemisphere.
Vassilas, C.A. (1999) ‘How often do GPs tell people with dementia about the truth about their
diagnosis?’ Alzheimer’s Disease Society National Newsletter, February 1999, 5.
Yale, R. (1998) Developing Support Groups for Individuals with Early-stage Alzheimer’s Disease. Baltimore,
MD: Health Professions Press.

Further reading and related references

Bamford, C., Lamont, S., Eccles, M., Robinson, L., May, C. and Bond, J. (2004) ‘Disclosing a
diagnosis of dementia: a systematic review.’ International Journal of Geriatric Psychiatry 19,
151–169.
De Lepeleire, J. and Heyrman, J. (1999) ‘Diagnosis and management of dementia in primary care at
an early stage: the need for a new concept and an adapted procedure.’ Theoretical Medicine and
Bioethics 20, 215–228.
Pratt, R. and Wilkinson, H. (2003) ‘A psychosocial model of understanding the experience of
receiving a diagnosis of dementia.’ Dementia 2, 181–199.
Robinson, L., Clare, L. and Evans, K. (2005) ‘Making sense of dementia and adjusting to loss:
psychological reactions to a diagnosis of dementia in couples.’ Aging and Mental Health 9,
337–347.
Wilkinson, H. and Milne, A.J. (2003) ‘Sharing a diagnosis of dementia – learning from the patient
perspective.’ Aging and Mental Health 7, 300–307.
Chapter 3

Timely Psychosocial
Interventions in
a Memory Clinic
Esme Moniz-Cook, Gillian Gibson,
Jas Harrison and Hannah Wilkinson

Overview
This chapter describes interventions to prevent or minimise disability and
distress in early dementia. The programme described was developed during
two controlled psychosocial intervention memory clinic studies and provides
protocols that promote health and psychosocial well-being in older people
with suspected dementia. First, the results and implications of the two studies
are summarised. Then a rationale for the programme protocols is presented.
Finally, four protocols are outlined:
• to provide a communication strategy for separating neurological
impairment from quality of life, following a memory assessment
• to promote health
• to pre-empt the negative impact of cognitive losses on functional
independence, by maintaining purpose, pleasure and valued
relationships
• to support family members.
We make use of anonymised case study illustrations to demonstrate how the
protocols may relate to individuals.

50
 Timely Psychosocial Interventions in a Memory Clinic 51

Background: early psychosocial

intervention ‘memory clinic’ studies
This programme was developed within controlled and implementation studies
that span over a decade in a UK memory clinic. Following memory clinic as-
sessment, the first study provided an in-home individualised psychosocial in-
tervention, using cognitive rehabilitation methods that included families in
supporting their relative in the use of external memory aids over a three-month
period. At six-month follow-up, these carers were more distressed compared
with the treatment-as-usual group (Moniz-Cook et al. 1998). However by
18-month follow-up, the treatment had a positive effect on memory in people
with early dementia (F = 14.49, df = 1,28, p = 0.001), as well as on carer de-
pression (F = 17.03, df = 1,18, p = 0.001) and carer anxiety (F = 15.58, df =
1,18, p = 0.001). In addition, more people with dementia in treatment group
were still living in their own homes.
In a second study, in addition to behavioural activation (pleasurable
activity), health promotion and carer support, interventions were added to the
original cognitive rehabilitation programme to provide home-based multi-
component psychosocial intervention for people with suspected dementia and
their families. Slightly increased levels of distress in carers at six months,
compared with treatment-as-usual, were noted (Moniz-Cook et al. 2001a,
2001b). However, this time the effect was not marked, probably due to inclu-
sion of the additional programme protocols, which may have moderated carer
distress over the initial intervention period. This second study also demon-
strated positive outcomes over time, where at 12-month follow-up people
with dementia were less depressed (F = 7.870, df =1,42, p = 0.0076), carers
reported fewer memory and behaviour problems (F = 8.883, df = 1,42, p =
0.0048), improved coping ability (F = 6.84, df = 1,41, p = 0.0124) and more
people with dementia were cared for at home.
The impact of early psychosocial intervention in early dementia on family
members is not well understood. For example, in one UK study families have
reported high satisfaction with a 7-week memory remediation group offered
to their relative with early dementia (James and Sabin 2005), but the conse-
quence was that they began to focus on their relatives’ deficits and thus pro-
gressed to assuming a ‘care-giving role’. An early memory remediation group
for people with suspected dementia and family carers also reported negative
effects on carer mood (Zarit, Zarit and Reever 1982), as did a group-based ed-
ucational support programme for family carers (Russell, Proctor and
Moniz-Cook 1989), which appeared to exacerbate anxieties about the future
or prognosis and dementia-related deterioration. Being aware of the risk of
reduced mood or depression among family carers during early psychosocial
52 Early Psychosocial Interventions in Dementia

intervention programmes is important, as carer mood is a good predictor of

family participation and adherence to in-home interventions (Gitlin et al.
1999).
In the two studies described above, the potential for developing mood
problems over time may have been reduced by regular contact by the practitio-
ner with the person and their family, after the initial three-month implementa-
tion of in-home psychosocial intervention. Further support for this conclusion
is seen in a study where families whose relatives with early dementia received
group-based day hospital intervention over a 12-month period reported high
satisfaction with this, but their mood significantly worsened, compared with
equivalent groups where carers and their relatives received in-home or outpa-
tient psychosocial treatments (Richards et al. 2003). What these studies show is
that families are an important part of the person with dementia’s social context
and that the impact of a psychosocial intervention will be influenced by this
context. Therefore, the person and the carer, as well as other supporting family
and friends, will need to engage with the aims of psychosocial intervention. To
properly focus an intervention requires assessment of personal circumstances,
relationships, concerns and hopes of both person with dementia and their
family (see Moniz-Cook 2008, for a framework for assessment).

Rationale
The early intervention programmes used in the studies above have their con-
ceptual and empirical basis within:
• models of psychosocial disability in dementia (Gilliard et al. 2005)
• paradigms of health promotion (Naidoo and Willis 2000;
Nutbeam 1998)
• psychosocial well-being.
We suggest that the aims of psychosocial interventions in a memory clinic are
helpfully set within the paradigm of health promotion. These may be de-
scribed as ‘secondary health promoting interventions’ (see Naidoo and Willis
2000) since they are early interventions that attempt to postpone progression
of a condition (in this case we have translated this to mean progressive disabilities)
and thus maintain well-being. In working with people with early dementia,
the aims may be:
• to prevent future distress by addressing the longer term sources of
‘excess disabilities’ (Sabat 1994), i.e. the extra health and
psychosocial disabilities commonly seen in older people with
 Timely Psychosocial Interventions in a Memory Clinic 53

suspected dementia that are not directly related to brain damage or

cognitive loss
• to promote maintenance of purpose, pleasure, meaningful activity,
valued relationships and quality of life.
Therefore the prophylactic function of intervention, i.e. strategies for prevent-
ing distress and disability and promoting health and psychosocial well-being,
is implicit within our defined aims of early intervention in dementia. Further-
more interventions may be offered irrespective of a dementia diagnosis, in-
cluding when this is uncertain, where a ‘watching brief ’ is needed or where
mild cognitive impairment is present.

‘Prevention’ and health promotion in early dementia

In recent years the notion of ‘preventable dementia’ has arisen in the context of
Vascular Cognitive Impairment (VCI) (Bowler and Hachinski 2003), Mild
Cognitive Impairment (MCI) (Tuokko and Hultsch 2006) and epidemiologi-
cal evidence of risk factors, neuro-protection and enhancing of neuronal
reserves (Purandare, Ballard and Burns 2005). From this literature the treat-
ment of vascular risk factors such as hypertension, high cholesterol, diabetes,
narrowing of the main arteries to the brain, heart disease and smoking are all
identified as important preventative strategies and these can continue to apply
to older people with early dementia. Similarly, strategies for neuro-protection
in the prevention of dementia – such as treatment for levels of folate and
vitamin B12 or antioxidants (Vitamins C and E and alcohol), are equally appli-
cable when a dementia diagnosis has been reached. For example, reduced
serum vitamin B12 may predispose people with frontotemporal dementia to
develop hallucinations and sleep disturbances (Engelborghs et al. 2004). The
third area of interest in preventing dementia is what has been described as ‘en-
hancing of neuronal reserves’ – often in middle age – by increasing cognitive,
physical and pleasurable social activity (Purandare et al. 2005). There is an
emerging empirical basis for this notion in early dementia. For example, there
is some evidence that people with Alzheimer’s disease can compensate for
cognitive loss in one area of the brain by increased activity in another brain
region (Grady 2007); cognitive stimulation can postpone cognitive decline in
dementia (Spector et al. 2003); and proactive physical and pleasurable social
activity can moderate mood decline in people with dementia (Eggermont and
Scherder 2006; Moniz-Cook et al. 2001a, 2001b; Teri et al. 1997) and their
carers (Moniz-Cook et al. 1998, 2001a, 2001b; Teri et al. 1997).
The health promotion literature outlines risks to functional independ-
ence, health and well-being in older people, including medication effects and
54 Early Psychosocial Interventions in Dementia

injurious falls (Nutbeam 1998). Common medications associated with falls

include narcotic painkillers, anticonvulsants and antidepressants (Kelly et al.
2003) or sedatives and hypnotics (Oliver et al. 2004). The health promotion
strategy for early dementia developed in the present early intervention
programme in the memory clinic described here did the following:
• monitored the known risk factors for developing dementia and
provided timely treatment when needed
• addressed the known risks (particularly falls, medication prescrip-
tion and medicine management) for functional dependency in
older people
• monitored and provided psychosocial intervention when needed,
such as cognitive, physical and pleasurable social activity to
maintain psychosocial well-being.
The person’s family physician (general practitioner, GP) acted as joint case
manager with the memory clinic practitioner (Moniz-Cook, Gibson and Win
1997), in the delivery of the programme.

‘Prevention’ and psychosocial disability in memory clinics

The introductory chapter of this book outlines the powerful impact of the
double stigma of age and dementia, which for many older people brings with
it fears of loss of control and misunderstandings of what could be achieved to
moderate or postpone distress and disability. This can have a subtle but impor-
tant effect on the potential for older people attending a memory clinic and
their families to engage with health-promoting and psychosocial interventions
that protect against the known negative consequences of a suspected dementia
on well-being and quality of life.
Some practices in specialist outpatient memory clinics can, we suggest, un-
dermine engagement of older people and families in programmes to promote
health and psychosocial well-being. For example, protocols of pre-diagnostic
counselling, requiring a person to decide whether they wish to be told their di-
agnosis or not – at a time when she or he may have only just tentatively decided
that it is worth exploring what is on offer to overcome, as yet, unexpressed
fears (Moniz-Cook et al. 2006) – may serve to reinforce the documented fears
of loss of control in first-time memory clinic attendees. Post-diagnostic proto-
cols for acetylcholinesterase inhibitor (AChEI) medications, information on
matters such as lasting power of attorney (in England and Wales), advance deci-
sions, social security benefits, driving, issues of safety and signposting to local
and national organisations have their place, but they too can sometimes under-
 Timely Psychosocial Interventions in a Memory Clinic 55

mine active engagement in proactive collaborative psychosocial interventions.

Where memory clinics have been established primarily for evaluation of
AChEI medications and these are not suitable for the individual, other forms of
protective interventions may be hard to achieve due to disappointed family
carers (Moniz-Cook et al. 1997) or under-resourced or skill-deficient practi-
tioners and protocols. Finally, if family anxieties are not addressed at the start,
family members may inadvertently undermine or not actively support activi-
ties that promote health and well-being.

The Hull Memory Clinic early intervention

protocols
The psychosocial disability dementia care model (Gilliard et al. 2005) suggests
that early psychosocial approaches should: focus on remaining abilities and
attend to the use of language to avoid negative stereotyping; provide activities
that promote autonomy; normalise or personalise activity support by basing
this on knowledge of past pleasures, values and interests; and provide a
gatekeeping function to prevent others – such as families and professionals –
from undermining access to interventions by the person with dementia. Four
protocols were developed for psychosocial care in the Hull Memory Clinic.
These were explicitly designed sequentially: to neutralise stigma at the time of
assessment; to promote health and psychosocial well-being; to support family
members. They reflect a multicomponent longitudinal dementia disease
‘self-management’ programme and, as is common for many secondary health
promoting interventions (Naidoo and Willis 2000), are set at the interface of
primary and secondary community-based care.
The programme comprises four parts, delivered consecutively:
1. A meeting with the person and family to discuss the memory tests.
2. An invitation to them and their wider family and friends to attend a
half-day workshop on ‘Understanding and Coping with Memory as
You Get Older’ (see Box 3.1).
3. Between six and eight in-home or outpatient treatment sessions over
12 months to provide components of the psychosocial intervention.
4. After 12 months, a system of longitudinal tracking, with support
where needed, from the memory clinic practitioner and the GP. Lon-
gitudinal tracking refers to a primary care strategy that allows a
‘condition specific’ case manager to routinely monitor people with
long-term health conditions.
56 Early Psychosocial Interventions in Dementia

In the studies described earlier each person with early dementia was ‘case
managed’ in primary care by a memory clinic practitioner and the person’s GP
(Moniz-Cook et al. 1997), unless the person or the family carer became signifi-
cantly distressed or respite and/or long-term care was required. In these in-
stances, the person was referred on to specialist mental health and social care
services. In the UK these are usually co-ordinated and delivered within sec-
ondary (i.e. community-based teams) or tertiary (i.e. psychiatric in-patient
hospital) care.

A language for separating neurological impairment from

quality of life
The memory assessment can be used to focus on remaining abilities and avoid
negative stereotyping by:
• clarifying the person’s strengths and how these may be maximised
• explaining the sources of reported memory concerns
• providing compensatory strategies for particular difficulties due to
cognitive loss.
Three methods were used in the Hull Memory Clinic, following memory
testing. Each were aimed at reinforcing cognitive strengths, outlining how
these may be maximised, providing explanations for reported memory
concerns and advising on compensatory strategies. The psychologist first used
a simplified illustration of cognitive function (the ‘cognitive map’, see Figure
3.1) for all patients and their families at the post-memory assessment meeting.
Then, where requested, a written summary of advice for concerns raised at the
family meeting (see Figure 3.2) was provided. Finally, families were invited to a
monthly half-day workshop to reinforce the principles of cognitive rehabilita-
tion (Box 3.1) which formed the basis of the first psychosocial intervention
component described later. The case studies of Donald, Fleur and Sandra that
follow illustrate how each of these methods worked in practice.

Box 3.1 Family Workshop: ‘Understanding

and Coping with Memory as You Get Older’

WHAT IS MEMORY?
· Immediate/working; Long term; and Prospective Memory.
Exercises on each of these, for example: What was the number we
showed you a few minutes ago? (immediate memory).
 Timely Psychosocial Interventions in a Memory Clinic 57

· Semantic (memory for facts); Episodic/autobiographical

(personal information); and Procedural/implicit (skills)
Memory.
Exercises on each of these, for example: What is the capital of France?
(facts); What did you have for breakfast? (episodic memory); Tie your
shoe laces (procedural/implicit memory).
· Verbal and Visual Memory.
Exercises on each of these, for example: What is the name of the
consultant? (verbal memory); What colour is the receptionist’s hair?
(visual memory).
· Recall and Recognition Memory.
Exercises on each of these, for example: Who was the famous cinema
actress who married Prince Rainier of Monaco? (recall); Who in the
room have you seen before today? Who is the lady in this photograph?
(recognition memory).
· Stages of the Memory Process

° Encoding (taking in or registering information)

° Storage (retaining)
° Retrieval (getting it out again).

OTHER COGNITIVE FUNCTIONS

· Language – speech and comprehension
· Perception
· Praxis – voluntary control of movement
· Executive functions.

COMPENSATING FOR MEMORY – RELATED

PROBLEMS
· Pros and cons to the idea of ‘Use it or Lose it’
· Why external memory aids?
· A review of strategies to compensate for particular memory
problems
· Efficient strategies for learning new things.
58 Early Psychosocial Interventions in Dementia

Case example – Donald

Donald, aged 78, was diagnosed with Alzheimer’s disease some four
years ago and had maintained a relatively active life until recently. His
wife reported that he had now become clumsy, often knocking teacups
over, and that he was unsteady on his feet resulting in a series of recent
falls. This had impacted on his life as he had lost the confidence to go
out for walks or tend to his garden. She believed that he was now too frail
to engage in such activities and he had become fearful of falling. The
consequence was that he had become depressed. An assessment
suggested particular new difficulties with depth perception, probably
due to infarction (since people with Alzheimer’s disease can also
develop vascular-related memory complaints) rather than frailty per se.
The simplified cognitive map (Figure 3.1) was used to explain to Donald
and his family the potential cause of the reported concerns. Once
reassured, he and his family engaged in rehabilitation to compensate
for this. Later he used similar strategies to overcome his ‘clumsiness’.
Donald’s understandable fears of falling were addressed with
fall-preventive strategies. He thus returned to going out for his regular
walks and gardening and reported that he was now much happier in
himself.

Case example – Fleur

Fleur, aged 78, was an active person who attended the memory clinic
because her husband John was convinced that she had Alzheimer’s
disease and wished to access drugs (i.e. the AChEIs) that might help her
with this. Fleur herself was not keen on any drugs – ‘let alone drugs for
the mind’. She felt that her memory ‘was fine’. Fleur and John had used
the internet to find out about dementia diagnoses before attending the
clinic. They both agreed that in the past three months she had become
somewhat hesitant and lacking in confidence, particularly with activities
in the home. John felt that he now had to do more to assist with
preparation of meals and some household tasks. Fleur had also recently
decided to stop driving and discontinue her insurance for their joint car.
During the post-assessment meeting with them, a diagnosis of vascular
dementia was discussed. John remained keen that his wife was offered
an AChEI and since she was not eligible for this in the UK National
Health Service, he wished to pay for it. Fleur did not want to take drugs
and, having outlined her day-to-day concerns, she requested a written
summary of the meeting (Figure 3.2) for her to discuss with their son and
daughter-in law, who were not present. Their son attended the half-day
workshop (see Box 3.1) with his mother and encouraged his father in
providing day-to-day support for Fleur, as they used in-home cognitive
 Timely Psychosocial Interventions in a Memory Clinic 59

rehabilitation to compensate for her day-to-day memory difficulties.

John continued to feel that his wife would benefit from a drug, but
nonetheless supported her in her efforts to maintain her pleasurable
social activities, including dropping her off to activities that did not
involve him, such as choir practice.

Frontal lobe Parietal lobe

Controls: goal-directed behaviour such as Visuospatial difficulties:
planning, organisation, sequencing; starting • depth perception (‘3-D’)
and stopping behaviour, self-monitoring and • objects in space
‘motivation’ (getting going); verbal/ideational • visual and sensory neglects.
fluency, attention, concentration, and flexibility Dyspraxia (voluntary control of movement):
of thought; working memory. • co-ordination
Day-to-day difficulties: • fluctuation in performance of everyday
tasks requiring movement, e.g.
• verbal/behavioural
‘impulsivity’
dressing, walking.
Disconnection
• ‘disinhibition’;
perseveration aphasias
• switching Broca’s area Occipital lobe
• divided/selective
attention Words Perceptual deficits:
• scanning. Speech production • misidentification
Expressive aphasias Wernicke’s area • agnosias (recogni-
Comprehension Receptive tion); object, face,
sensory and auditory
aphasias
• sensory disturbance
– inability to see
Temporal lobe
• visual memory (right hemisphere) colour or feel
• auditory memory (left hemisphere) texture/heat.
• recognition, recall, new learning,
recent and remote memory.

Mid-brain

Figure 3.1 Using a simplified ‘cognitive map’ to discuss the memory assessment
60 Early Psychosocial Interventions in Dementia

Sometimes you might have Your ability to find

subtle problems ‘getting your way about is
going’ or ‘starting fine.
activities’, i.e. your ‘starter
motor’ is slowed (see 3
below).

Your ability to
understand others is
fine.
Overall your
speech is fine.

Sometimes you do not see

Overall your memory things on your left side as well
functions are doing well. as you see things on your right
side. This may be why you have
difficulty filling in your
crossword puzzles (see 4
below).

Figure 3.2 Example of written information provided for Fleur and her family

Here are some explanations to the questions you raised with us at our meeting.
1. What are TIAs/mini strokes? Transient ischemic attacks (TIAs) and ‘mini
strokes’ are the second most common cause of memory difficulties in people
over 65. They occur when a part of the brain is temporarily deprived of its blood
supply, which carries oxygen to the brain. They may occur suddenly and last for
quite short periods – between 5 and 30 minutes and much less in the case of a
TIA. Sometimes people may not be aware they are happening (particularly as in
the case of a TIA); others may be aware of ‘strange sensations’; and in other
cases temporary problems such as double vision, numbness, weakness or
tingling in an arm, leg, hand or foot and dizziness are reported. Mostly people
feel they have ‘recovered’ from these episodes after a period of time. Mini
stroke can affect any part of the brain – in your case they have generally
affected functioning towards the back of the brain. This means that most of the
brain is working fairly normally for your age and some parts of the brain may
also sometimes take over the function of parts where complete recovery from
the mini stroke has not occurred. Some of the concerns you have raised with us
are where you are noticing the impact of mini stroke (see below – 3 and 4).
2. How can I stop things from getting worse? We have advised your GP to
consider prescribing aspirin to thin your blood and thus reduce the likelihood of
a further mini stroke. It is important however, that you do not start taking any
medication without your GP’s consent, as certain medication (including aspirin)
 Timely Psychosocial Interventions in a Memory Clinic 61

could interfere with your general health. Having high blood pressure can make
things worse but your GP has already prescribed you with medication to lower
your blood pressure. You should ensure that you attend surgery regularly for
blood pressure checks and at least once a year for blood tests to check that you
have not developed new conditions such as anaemia, diabetes and so on.
Alcohol needs to be kept to a minimum as excessive alcohol, like fat and salt,
raises blood pressure. Since you are hypertensive it may also be a good idea to
slightly reduce your caffeine (coffee and tea) intake. You are therefore advised to
eat a well-balanced diet, which is low in fat and salt. Exercise can also help so
check with your GP about sources of advice for this or book into one of our
Active Lifestyles Consultations at our drop-in-centre. Going for a regular 15–20
minute walk each day is probably all you need for now, but take care on
pavements (see 4 below).
3. Why do I have trouble ‘getting going’? You may find that sometimes you
have difficulty putting your thoughts into action. Although you may know exactly
how to do something and can describe it to others, you have difficulty carrying
out the action or activity. You may find that you have difficulty starting an activity,
i.e. your ‘starter motor’ is slow. Sometimes this can make other people think that
you are ‘hesitant’ or have lost confidence or are being slow, but it is important to
recognise that this is not the case. If this occurs, try asking your husband to phys-
ically prompt you to get going on a task – as we have demonstrated to you at
clinic, once you have got going, you won’t have too much trouble continuing
with what you want do.
4. Why do I have difficulty filling in my crosswords? Our tests showed that
often you see things better on your right side than your left side. You are already
compensating for this by moving things around until you can see them properly
and you should continue to do this as it is a very good strategy. For the same
reason you may: (a) bump into things more easily such as doors or furniture
because although your eyesight is fine, you might occasionally ‘miss’ or
‘misperceive’ parts of your environment; (b) become at risk of stumbling or
tripping over kerbs, paving stones or rugs. These and times when you are getting
in and out of chairs/beds or using the toilet/bath can unfortunately precipitate a
fall. We will discuss with you and your husband ways in which you may reduce
the risk of falls when we visit you at home.
5. Should I stop any of my social activities? It is vital that you do not stop or
withdraw from the social activities/hobbies that you currently engage in even
though you may now be embarrassed at the apparent ‘mistakes’ you make. With
respect to the social activities that you enjoy with your family and friends it is a
case of adopting the policy of ‘use it or lose it’ as they provide you with
important mental stimulation. Do things with people you trust – they will overlook
your occasional mistake and encourage you to keep going. Do continue with
your choir, weekly dancing, contact with your grandchildren, attending classical
concerts and theatre and other activities.
62 Early Psychosocial Interventions in Dementia

Case example – Sandra

Sandra, aged 67, had lived with her daughter Brenda for the last 20
years and had supported her in raising her sons and managing the
home. She reported that she was concerned about her declining
memory. Brenda did not feel that her mother had memory problems but
that she had become increasingly ‘lazy’ and had, for example, lost
interest in the house. Brenda felt that she had to constantly ‘nag’ at her
mother to do things. They both agreed that this had led to increasing
tension in the household. The memory assessment indicated that
Sandra was developing what psychologists refer to as ‘dysexecutive
syndrome’, where more than one of the cognitive deficits associated
with the front of the brain (Figure 3.1) were noted, including difficulties
with task initiation. In contrast, most aspects of memory function were
relatively unimpaired. The simplified ‘cognitive map’ was used to
explain to Sandra and Brenda the consequences of deficits associated
with ‘dysexecutive syndrome’, including how reduced ‘initiation’ can
affect a person’s ability to do things that they wish to. Brenda remained
sceptical and decided to await outcome of the MRI scan which was
underway. In the meantime she and her mother attended the half-day
workshop where Sandra (see previous case) and her son were also
present. They had grasped the concept of difficulty in initiating tasks due
to ‘starter motor problems’ and described their successes in overcoming
the effects of this using the advice provided (see Figure 3.2). This
motivated Brenda to take advantage of rehabilitation techniques to
prompt initiation and thus assist her mother in increasing her activity
around the home. Subsequently Sandra was diagnosed with a
frontal-type dementia.

Promoting health in early dementia

The interventions included in this protocol are based on the rationale for
health promotion in early dementia outlined previously. The following
reviews were routinely applied, usually by a memory nurse, or where available
(as noted in brackets below) a relevant primary care professional:
• medication review (pharmacist)
• diet and nutrition review (dietician)
• exercise and physical activity review (therapist)
• risk of injury due to falling review (therapist).
Treatment was provided by the GP who also monitored health status for new
conditions such as infection, anaemia and diabetes. The longitudinal tracking
system allowed the memory clinic case manager, usually the memory nurse, if
 Timely Psychosocial Interventions in a Memory Clinic 63

needed, to prompt the person and the carer to request review (with a recom-
mended minimum of once a year) by the GP.

Promoting control and pleasure in early dementia

The interventions included in this protocol may be seen as those which
enhance neuronal reserves through cognitive, social and leisure activity; i.e. the
third group of strategies outlined by Purandare et al. (2005, p.176). However,
the psychosocial literature on the development of disability in older people
with suspected dementia offers a stronger rationale for this protocol, where in-
terventions included can have two separate aims as follows:
1. To provide cognition-orientated activity that promotes a sense of
control and autonomy by counteracting the anxieties and fears
(Moniz-Cook et al. 2006) associated with declining memory in
ageing, since anxiety is strongly associated with the progression of
disability (Brenes et al. 2005).
2. To promote normalisation and social integration (Carter and Everitt
1998), i.e. purposeful, meaningful activity and friendships, since
these are core components of positive mental health and well-being
and known moderators of hopelessness and depression in old age
(Pinquart 2002; Takahasi, Tamura and Tokoro 1997).

Cognition-orientated activity
Three cognitive activity interventions were pursued: two were cognitive reha-
bilitation interventions and the third provided advice on maximising cognitive
strengths such as during conversation, activities of daily living and leisure.
These will be outlined next.
1. Prophylactic cognitive rehabilitation. This involves training in the use of
important external memory aids (see Moniz-Cook et al. 1998, Table
1, p.202; Orani et al. 2003) aimed at establishing implicit orientation
procedures to counteract future decline in prospective and episodic
memory. Rehabilitation usually includes the family carer(s) and the
psychologist in an active training errorless learning programme
based on spaced retrieval techniques (Camp, Bird and Cherry 2000)
where goal attainment (i.e. implicit use of external memory aids to
support memory) should be reached in a maximum of two weeks.
The rationale for this intervention is evidenced in an early study
where, as compared with the treatment-as-usual group, the majority
of people with early dementia remained at home at 18-month
follow-up, since their implicit use of an ‘orientation board’ allowed
64 Early Psychosocial Interventions in Dementia

them the control to remain at home without constant supervision

from their family carer (Moniz-Cook et al. 1998, p.207). The case of
Bob demonstrates how the wider primary care network may also
support prophylactic use of external memory aids.

Case example – Bob

Bob, aged 77, was a retired company director and an accountant by
profession. His sense of pride lay in his excellent memory which despite
his early dementia did not cause him or his wife problems at present. He
resisted engagement in prophylactic cognitive rehabilitation to establish
implicit orientation procedures, since he believed that this would be the
‘lazy way out’ and that he needed to ‘stimulate his memory by testing it
each day’. In his opinion a cognitive rehabilitation programme was only
necessary if and when his memory worsened. Six months later his GP
conducted a home visit since Bob was feeling ‘under the weather’.
During this consultation Bob discovered that his GP, whose opinion he
valued, used memory aids to improve his own memory efficacy.
Encouraged by his GP and with support from his wife and the
psychologist, Bob engaged in prophylactic memory training using
external memory aids of his choice. Bob lived at home with his wife for
eight further years, until he required two months of nursing home
palliative care during the final stages of cancer.

2. Cognitive rehabilitation to compensate for, or resolve, current everyday

concerns for the person (Chapter 4), or more often problems due to
forgetting reported by adult children whose parent lived alone, such
as repeated questioning and demanding phone calls (Moniz-Cook et
al. 1998). The case studies of Charles and Mary demonstrate how
older people living alone can be helped with focused cognitive reha-
bilitation, to overcome their memory-related problems and remain
living at home. The strategies and measurement of outcome for these
cases are found in Moniz-Cook et al. (1998, Table 1, p.202).

Case example – Charles

Charles, aged 81, had recently allowed teenage boys known to
experiment with drugs into his home. His son and neighbours were
concerned as Charles insisted on retaining sums of money in the home.
He was a friendly man who was generous to young people such as his
teenage and young adult grandchildren. Charles was an active man
whose functional independence was relatively good. Apart from support
with meal preparation and laundry from his housing provider, he
maintained self-care and enjoyed riding his bike to his allotment. He
attended the memory clinic with his son but insisted that he was fine and
 Timely Psychosocial Interventions in a Memory Clinic 65

refused to complete the memory tests. In his view entry to residential care
for his safety was not an option as ‘he would rather be dead, like his
brother who had dementia’, and had apparently survived only two
months following admission to a care home, some years previously. A
face recognition programme was established with the cooperation of his
neighbour and his son using six familiar and six ‘stooge strangers’ who
initially visited him at home each day. The frequency of visits was graded
over eight weeks until he consistently refused entry to strangers over
three consecutive weeks. Charles lived at home until his death of a heart
attack, some four years later.

Case example – Janet

Janet aged 75, rang her daughter up to 26 times a day, including
night-time. Her stressed daughter was convinced that she had
dementia, although she was fully functional in the home and despite
equivocal findings at the memory clinic where, at the most, Mild
Cognitive Impairment of vascular origin (MCI-VaD) was possible. The
psychologist established an intensive in-home cognitive rehabilitation
programme with the support of her son, who worked abroad but was on
home leave with his own family for three weeks. Over a six-week period
of intensive training in the use of external memory aids (i.e. a clock with
an automatic day and date, used in conjunction with a calendar and a
noticeboard for control of prospective memory and a ‘memory
orientation space’ for important items such as her savings book and
important letters), Janet’s anxious phone calls reduced to three times a
day, with no night-time calls, with further improvements to once a day by
12-week follow-up. This was maintained at eight-month follow-up, but
four months later Janet was admitted to hospital following a fall whilst
out shopping. During this admission her daughter was told that she had
dementia and, with support from social services, transfer to a care home
was arranged. Janet was agitated at the care home and constantly
attempted to leave. She was prescribed sedatives and following a
subsequent fall and re-admission to hospital, she suffered a fatal stroke,
six weeks later.

3. Maximising cognitive strengths using the principles of compensation.

Strategies include applying focused attention techniques, reducing
cognitive load and maintaining pleasurable mental activity. Examples
of these are: using short sentences or closed questions and avoiding
pronouns during conversation; reducing the demand for sustained
conversation during activities of daily living such as mealtimes;
enhancing memory retrieval with visual and verbal cues; and devel-
oping personal plans for pleasurable mental activity that are based
on past interest and values and are also achievable.
66 Early Psychosocial Interventions in Dementia

Many of these methods can now be found in texts that have emerged recently
(see Clare 2008; Clare and Woods 2001; Hill, Backman and Neely 2002;
Woods and Clare 2008).

Purposeful, pleasurable and social activity

Behavioural activation interventions for both the person with dementia and
their spouses or partners were used to prevent depression in both, since de-
pressed people with dementia often have depressed family carers (Teri and
Truax 1994). Activities should have value, meaning, purpose and provide
pleasure for the person and carer. The finding that older people benefit more
from social support than behavioural intervention, which if used on their own
may be detrimental (Jané-Llopis et al. 2002), is an important additional
guiding principle for behavioural activation programmes. The Seattle Depres-
sion Protocol outlines how this may be achieved (Teri et al. 1997; Teri,
Lodgson and McCurry 2002, p.647). Methods extracted from the Seattle
programme for the Hull-based protocol included:
• scheduling enjoyable activities based on past interests and
pleasure, but modifying them if needed
• providing resources such as transport or a volunteer to support the
activity
• involving the spouse or partner in the activity where shared
pleasure is possible
• using reminiscence including developing life story books and
collages (Chapter 11)
• scheduling pleasurable social activity or valued social contact and
providing structure for this where opportunities do not exist
(Chapter 12).
People with dementia and their spouses found pleasure in a wide range of ac-
tivities. Examples included ‘home making – maintaining the household’,
going for walks or to the gym, going on holiday, regular singing and dancing
sessions with friends, listening to music, joining in pub quizzes, using a
computer, having meals with friends, volunteering to assist in a charity shop or
a playgroup for children, looking after grandchildren, baking for neighbours,
talking to newly diagnosed people with dementia and fund-raising for the
Alzheimer’s Society. These activities were monitored by the memory clinic
case manager within the longitudinal tracking system.
 Timely Psychosocial Interventions in a Memory Clinic 67

Family carer support

This final protocol provided for the ongoing needs of family caregivers and
included the following methods:
• problem solving (Moniz-Cook et al. 2008)
• group psycho-educational workshops where carers could attend
alone or with their relatives. The workshops comprised advanced
strategies as a follow-up to the initial family workshop; communi-
cation skills training targeting conversation; and introduction to
the principles of emotion-orientated communication where
anxieties may be validated to reduce episodes of disorientation
(Finnema et al. 2000). The final case of Peter and his wife Agnes is
an example from one such workshop.

Case example – Peter and Agnes

Peter’s wife Agnes was concerned about his visual hallucinations. Peter
often mistook his dressing gown, hung on his bedroom door, as a
person standing in the bedroom. He was not anxious about this and
often ‘conversed’ with the person. However, Agnes was highly distressed
about his ‘loss of mind’ and worried that he might in the future not know
her. The simplified cognitive map was used to explain how occipital lobe
damage could contribute to visual disturbances which were often
temporarily worse when the brain was overstimulated, such as at night.
During the workshop, Irene, daughter of a man with vascular dementia,
described how she and her father had, with support from the
psychologist, reduced the frequency of such ‘misperceptions’. Jeanne,
another adult-child carer reported that she had found the book The Man
Who Mistook His Wife for a Hat (Sachs 1970) helpful in understanding
similar difficulties in her mother. Agnes was reassured that her
husband’s ‘hallucinations’ were associated with ‘tricks of the brain’
rather than significant loss of mind.

Conclusions
The psychosocial interventions described in this chapter are focused on the
first three steps of the framework for psychosocial intervention in early
dementia, suggested in Chapter 1. They target health promotion, well-being
and social integration, in order to counteract ‘learned helplessness’ since
people with suspected dementia may be particularly vulnerable to this
(Flannery 2002). Learned helplessness is a psychological state that is associ-
ated with mood disorders and results when a person who is unable to control
68 Early Psychosocial Interventions in Dementia

one situation incorrectly assumes that she or he is unable to exercise reasonable

control in other situations as well.
There is a fourth step in the framework for reducing excess disability in
early dementia. This provides psychological treatment for people and their
carers who are depressed or anxious, but is out of the scope of the present
chapter since in this primary care-based memory clinic low estimates of 14 per
cent for anxiety and 2 per cent for depression were noted, probably because
early recognition practices by local GPs were well established (Moniz-Cook et
al. 2001a, 2001b). In contrast, Clare et al. (2002) report higher levels in
recently diagnosed memory clinic attendees, with 40 per cent experiencing
anxiety and 17 per cent depression. Where people with dementia and their
families have developed learned helplessness and/or mood disorders, psycho-
logical therapies such as cognitive behavioural therapy, relaxation strategies
offered individually (Balasubramanyam, Stanley and Kunik 2007; Flannery
2002; James 2002; Scholey and Woods 2003; Suhr, Anderson and Tranel
1999; Walker 2004) or in groups (Kipling, Bailey and Charlesworth 1999),
interpersonal therapy (James, Postma and Mackenzie 2003) and group psy-
chotherapy (Chapter 9) have all been used with some success to alleviate
anxiety and depression. There has been one randomised controlled trial of
brief psychodynamic interpersonal therapy which reported no evidence to
support the widespread introduction of brief psychotherapy in early dementia
(Burns et al. 2005). Anxious or depressed carers have also benefited from psy-
chological treatments (Marriott et al. 2000).
As was seen in some case studies above, delivering timely psychosocial in-
tervention in early dementia or where a dementia diagnosis is not yet evident is
not straightforward. Engagement in intervention often depends on the atti-
tudes, beliefs and aspirations of the person, their spouse or partner and their
wider family or support systems. Where differing attitudes, beliefs and aspira-
tions or tensions exist, psycho-educational family conferences (Woolford
1998) may help, or separate practitioners may be required to meet the aspira-
tions of the person with dementia and of the carer. However, for most families,
the studies described in this chapter and related interventions in North
America suggest that it is possible for skilled practitioners to offer prophylactic
psychosocial intervention within a longitudinal tracking system (see, for
example, Callahan et al. 2006; Mittelman et al. 2006; Teri et al. 2005).

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 PART II

Cognitive and
Memory Support
Chapter 4

Working
with Memory Problems
Cognitive Rehabilitation
in Early Dementia
Linda Clare

Overview
Memory problems are an important part of the changes experienced by the
majority of people who are in the early stages of dementia (Brandt and Rich
1995), and the development of memory problems can have a profound impact
on sense of self, daily life and relationships. The person with a memory
problem may feel angry or distressed, or fear he or she is ‘going mad’. Families,
friends and supporters may experience frustration or irritation, and often find
it hard to know how to respond. Helping with memory problems, therefore,
has the potential to enable the person with dementia to feel more in control,
and to assist others in responding appropriately. For this reason, targeting
memory-related concerns is likely to be an important part of early intervention
in dementia (Clare et al. 1999). This chapter will outline what is meant by cog-
nitive rehabilitation, give some examples of specific techniques, and consider
what factors are important when trying to implement a cognitive
rehabilitation approach.

Cognitive rehabilitation
A useful framework for helping with memory and other cognitive problems is
provided by the cognitive rehabilitation approach. This model was initially de-
veloped through work with younger brain-injured people, and more recently

73
74 Early Psychosocial Interventions in Dementia

it has been applied to address the needs of people with dementia (Clare and
Woods 2001). It has been defined as: ‘any intervention strategy or technique
which intends to enable clients or patients, and their families, to live with,
manage, by-pass, reduce or come to terms with deficits precipitated by injury
to the brain’ (Wilson 1997, p.487).
Within this framework, the memory problems of early dementia can be
tackled in two main ways (Clare and Wilson 1997):
• building on remaining memory skills
• finding ways of compensating for impaired aspects of memory.
Rehabilitation is conducted in the context of a natural trajectory of change
over time, which varies according to the individual, the nature of the impair-
ment, and the social context (Clare and Woods 2004). Due to the progressive
nature of Alzheimer’s disease, rehabilitation goals will change over time in a
way that reflects this trajectory (Clare 2003). In the early stages of dementia,
changes in cognitive functioning and the impact of these on daily life and rela-
tionships are likely to form a major focus, so cognitive rehabilitation may be
particularly relevant. Although people with early dementia may have some
obvious and severe memory problems, they are to some extent still able to learn
some new information, retain information they have learned, improve their
practical skills, and adapt or change their behaviour (see, for example, Camp et
al. 1993; Little et al. 1986). This is because in the early stages of dementia dif-
ferent aspects of memory are affected to different degrees (Brandt and Rich
1995), and some are not affected at all. Memory for recent events and personal
experiences is likely to be most severely affected, while the ability to carry out
practical skills is least affected. Although taking in new information can be
very difficult, established memories tend to be retained reasonably well
(Christensen et al. 1998). This means that if the right kind of help is given,
some improvements in memory and everyday functioning may be possible
(Bäckman 1992). Specific techniques have been described that are suitable for
use with people who have dementia, whether the aim is to build on remaining
memory or to compensate for memory losses.

Building on remaining memory

Building on remaining memory can involve either aspects of memory that are
impaired or aspects of memory that are relatively intact. Helping people take
in information depends on using the impaired aspects of memory. Methods
which may be helpful include the following:
 Working with Memory Problems: Cognitive Rehabilitation in Early Dementia 75

• Elaborating on the information that needs to be remembered (Bird and

Luszcz 1993). This can be done by linking it to other knowledge.
For example, the name Butler can be linked to the job done by a
butler. The role of a butler could be play acted as well, since
involving multiple senses can aid learning (Karlsson et al. 1989).
• Mnemonics. These can sometimes help with remembering names
(Hill et al. 1987). A prominent feature of the person’s face or
appearance is identified and linked with the sound of the first
letter of their name. For example, Rab Butler, whose photograph
taken in late middle age shows a balding head, might be remem-
bered as ‘rather bald’ Rab Butler.
• Expanding rehearsal. This is sometimes referred to as spaced
retrieval (Brush and Camp 1998; Camp and Stevens 1990). After
the information has been given to the person with dementia,
questions are asked at gradually increasing intervals to elicit the
information. The first interval might be as little as 20 or 30
seconds, the second interval is double the length of the first, and
the process continues until the desired retention interval is
reached. If the information is not recalled, the intervals are halved
until the person can recall it again. For example, having learned
the name Rab Butler in the ways described above, the person
could be asked to recall the name after intervals of 30 seconds,
one minute, two minutes, and so on.
• Errorless learning. It may be helpful to try to reduce the risk of the
person making mistakes while learning (Clare et al. 1999, 2000,
2001). This means that guessing should be discouraged. If the
person is unsure, the correct information can be supplied, rather
than risking a wrong guess.
Building on the more preserved aspects of memory generally involves re-
hearsal and practice of activities of daily living and other skills (Josephsson et
al. 1993; Zanetti et al. 1994). Practice is structured in such a way that the
person is guided through the activities by means of prompts and cues, rather
than having to recall what needs to be done. The prompts and cues, which may
be verbal, gestural, pictorial or written, can be withdrawn gradually as the
routines become more established. This kind of approach may be particularly
important for maintaining independence.
76 Early Psychosocial Interventions in Dementia

Case example – Alan

Alan was frustrated and upset because he could not remember the
names of the other members of his social club. To help him learn the
names, photographs were taken of the club members and the names
were practised one at a time. For each name, Alan thought of a
mnemonic (for example, Caroline with the curl), and expanding
rehearsal was used to help him recall the name over a 20-minute
interval. Later, Alan took the photographs to the club and tried matching
them to the members and then recalling their names. By doing this, and
practising with the photographs each day, Alan managed to learn all the
names. He continued to practise, and still recalled all the names
perfectly a year later (taken from Clare et al. 1999).

Compensating for memory problems

If information cannot be held in memory, it may be possible to compensate for
this by providing access to it in alternative ways. Memory aids may take over
some of the functions of memory. For example, a calendar or diary can be used
to find out the date (Hanley 1986), while a memory book or memory wallet
containing important personal information can give reminders about things to
say in conversation with others (Bourgeois 1990, 1992). Cues can be built
into the person’s surroundings. For example, signs on drawers and cupboards
can indicate where things are kept, while checklists can describe how to carry
out practical tasks.
In order for the person with dementia to make use of memory aids and en-
vironmental adaptations, he or she needs to understand exactly what they are
for (Woods 1996a) and develop the habit or routine of using them. This can be
done by prompting the person to use them regularly and providing cues to
make sure this is successful. As the routine becomes established, the cues and
prompts can be gradually reduced.

Case example – Evelyn

Evelyn often asked her husband Eric ‘What day is it today?’ Eric had
bought Evelyn a calendar that showed one day to a page, but grumbled
that she had never used it. Eric agreed to prompt Evelyn to look at her
calendar and tell him the day every morning, afternoon and evening.
Each time Evelyn asked him what day it was, he also suggested that she
look at her calendar. After a few weeks, Evelyn was using the calendar
regularly and Eric gradually stopped prompting her. Both Evelyn and
Eric felt much happier now that Evelyn was using the calendar instead of
asking Eric the same question repeatedly (taken from Clare et al. 2000).
 Working with Memory Problems: Cognitive Rehabilitation in Early Dementia 77

Implementing cognitive rehabilitation

Cognitive rehabilitation interventions for people with dementia may be
carried out individually (Clare et al. 1999), with families (Quayhagen and
Quayhagen 1989), in a group (Sandman 1993), or as part of a wider
programme of psychosocial intervention (Moniz-Cook et al. 1998) or ‘elder
rehab’ (Arkin 1996). The interventions may be delivered primarily by health
professionals, carers, friends or volunteers. Whichever method is chosen, and
whoever is involved in carrying them out, it is essential to ensure that the inter-
vention is sensitive to individual needs. It is also important to acknowledge
that some people with early stage dementia will prefer not to address their
memory problems in this way, and their choice must be respected. If appropri-
ate, advice may still be given to carers or family members on responding to
memory difficulties. Guidelines on implementing cognitive rehabilitation in-
terventions are provided by Bäckman (1992), Clare et al. (1999), and Woods
(1996b). These suggest that cognitive rehabilitation interventions should be:
• directed at specific individual goals which are realistic, practically
relevant and meaningful to the person
• based on an assessment of the individual’s strengths and difficul-
ties in memory and other areas of cognitive functioning, including
an observation of functioning in relevant real-life settings
• founded on a shared understanding of the aims and goals of the
intervention and the methods used
• sensitive to the emotional impact of memory problems and the
wider needs of people and families adjusting to the onset of
dementia
• carried out in a collaborative manner involving not only the
person with dementia but also his or her family members or sup-
porters, who may be crucial to the success of any intervention and
are in a position to integrate the methods of cognitive rehabilita-
tion into daily life
• sufficiently extensive to facilitate change, with ongoing input after
the end of the main intervention to allow gains to be maintained.
Following these guidelines may help to ensure that the needs of the person
with dementia are met at each stage of the process of working together to
tackle the memory problems.
78 Early Psychosocial Interventions in Dementia

Conclusion
Memory problems signalling the onset of dementia can be frightening, upset-
ting and frustrating. The work described in this chapter shows that although
the memory problems cannot be cured, there are some things that can help.
However, it should be noted that there is a lack of randomised controlled trials
of individualised cognitive rehabilitation for people with early stage dementia,
highlighting the need for more evidence to support the use of such interven-
tions (Clare et al. 2003). A review of the existing research on memory therapy
concluded that it was a ‘probably efficacious’ method of helping people with
dementia (Gatz et al. 1998). Interventions of this kind, provided they are im-
plemented in a sensitive manner, may assist individuals and families and
improve aspects of their daily lives.

References
Arkin, S.M. (1996) ‘Volunteers in partnership: an Alzheimer’s rehabilitation program delivered by
students.’ The American Journal of Alzheimer’s Disease 11, 12–22.
Bäckman, L. (1992) ‘Memory training and memory improvement in Alzheimer’s disease: rules and
exceptions.’ Acta Neurologica Scandinavica, Supplement 139, 84–89.
Bird, M. and Luszcz, M. (1993) ‘Enhancing memory performance in Alzheimer’s disease: acquisition
assistance and cue effectiveness.’ Journal of Clinical and Experimental Neuropsychology 15, 921–932.
Bourgeois, M.S. (1990) ‘Enhancing conversation skills in patients with Alzheimer’s disease using a
prosthetic memory aid.’ Journal of Applied Behavior Analysis 23, 29–42.
Bourgeois, M.S. (1992) ‘Evaluating memory wallets in conversations with persons with dementia.’
Journal of Speech and Hearing Research 35, 1344–1357.
Brandt, J. and Rich, J.B. (1995) ‘Memory Disorders in the Dementias.’ In A.D. Baddeley, B.A. Wilson
and F.N. Watts (eds) Handbook of Memory Disorders. Chichester: Wiley.
Brush, J.A. and Camp, C.J. (1998) A Therapy Technique for Improving Memory: Spaced Retrieval.
Beechwood, OH: Myers Research Institute, Menorah Park Center for the Aging.
Camp, C.J. and Stevens, A.B. (1990) ‘Spaced retrieval: a memory intervention for dementia of the
Alzheimer’s type (DAT).’ Clinical Gerontologist 10, 58–61.
Camp, C.J., Foss, J.W., Stevens, A.B., Reichard, C.C., McKitrick, L.A. and O’Hanlon, A.M. (1993)
‘Memory training in normal and demented elderly populations: the E-I-E-I-O model.’ Experi-
mental Aging Research 19, 277–290.
Christensen, H., Kopelman, M.D., Stanhop, N., Lorentz, L. and Owen, P. (1998) ‘Rates of forgetting
in Alzheimer dementia.’ Neuropsychologia 36, 547–557.
Clare, L. (2003) ‘Rehabilitation for People with Dementia.’ In B.A. Wilson (ed.) Neuropsychological
Rehabilitation: Theory and Practice. Lisse: Swets & Zeitlinger.
Clare, L. and Wilson, B.A. (1997) Coping with Memory Problems: A Practical Guide for People with Memory
Impairments and their Relatives and Friends. Bury St Edmunds: Thames Valley Test Company.
Clare, L. and Woods, R.T. (2001) Cognitive Rehabilitation in Dementia. Hove: Psychology Press.
Clare, L. and Woods, R.T. (2004) ‘Cognitive training and cognitive rehabilitation for people with
early-stage Alzheimer’s disease: A review.’ Neuropsychological Rehabilitation 14, 385–401.
Clare, L., Wilson, B.A., Breen, K. and Hodges, J.R. (1999) ‘Errorless learning of face–name
associations in early Alzheimer’s disease.’ Neurocase 5, 37–46.
Clare, L., Wilson, B.A., Carter, G., Gosses, A., Breen, K. and Hodges, J.R. (2000) ‘Intervening with
everyday memory problems in early Alzheimer’s disease: an errorless learning approach.’ Journal
of Clinical and Experimental Neuropsychology 22, 132–146.
Clare, L., Wilson, B.A., Carter, G., Hodges, J.R. and Adams, M. (2001) ‘Long-term maintenance of
treatment gains following a cognitive rehabilitation in early dementia of Alzheimer type: a
single case study.’ Neuropsychological Rehabilitation. Special Issue: Cognitive Rehabilitation in Dementia
11, 477–494.
Clare, L., Woods, B., Moniz-Cook, E., Orrell, M. and Spector, A. (2003) ‘Cognitive rehabilitation
and cognitive training interventions targeting memory functioning in early stage Alzheimer’s
 Working with Memory Problems: Cognitive Rehabilitation in Early Dementia 79

disease and vascular dementia (review).’ In The Cochrane Database of Systematic Reviews, Issue 4.
Chichester: Wiley.
Gatz, M., Fiske, A., Fox, L., Kaskie, B., Kasl-Godley, J., McCallum, T. and Wetherell, J.L. (1998)
‘Empirically validated psychological treatments for older adults.’ Journal of Mental Health and
Aging 4, 9–45.
Hanley, I. (1986) ‘Reality Orientation in the Care of the Elderly Patient with Dementia – Three Case
Studies.’ In I. Hanley and M. Gilhooly (eds) Psychological Therapies for the Elderly. Beckenham:
Croom Helm.
Hill, R.D., Evankovich, K.D., Sheikh, J.I. and Yesavage, J.A. (1987) ‘Imagery mnemonic training in a
patient with primary degenerative dementia.’ Psychology and Aging 2, 204–205.
Josephsson, S., Bäckman, L., Borell, L., Bernspang, B., Nygard, L. and Ronnberg, L. (1993)
‘Supporting everyday activities in dementia: an intervention study.’ International Journal of
Geriatric Psychiatry 8, 395–400.
Karlsson, T., Bäckman, L., Herlitz, A., Nilsson, L., Winblad, B. and Osterlind, P. (1989) ‘Memory
improvement at different stages of Alzheimer’s disease.’ Neuropsychologia 27, 737–742.
Little, A.G., Volans, P.J., Hemsley, D.R. and Levy, R. (1986) ‘The retention of new information in
senile dementia.’ British Journal of Clinical Psychology 25, 71–72.
Moniz-Cook, E., Agar, S., Gibson, G., Win, T. and Wang, M. (1998) ‘A preliminary study of the
effects of early intervention with people with dementia and their families in a memory clinic.’
Aging and Mental Health 2, 199–211.
Quayhagen, M.P. and Quayhagen, M. (1989) ‘Differential effects of family-based strategies on
Alzheimer’s disease.’ Gerontologist 29, 150–155.
Sandman, C.A. (1993) ‘Memory rehabilitation in Alzheimer’s disease: preliminary findings.’ Clinical
Gerontologist 13, 19–33.
Wilson, B.A. (1997) ‘Cognitive rehabilitation: how it is and how it might be.’ Journal of the
International Neuropsychological Society 3, 487–496.
Woods, R.T. (1996a) ‘Cognitive Approaches to the Management of Dementia.’ In R.G. Morris (ed.)
The Cognitive Neuropsychology of Alzheimer-type Dementia. Oxford: Oxford University Press.
Woods, R.T. (1996b) ‘Psychological “Therapies” in Dementia.’ In R.T. Woods (ed.) Handbook of the
Clinical Psychology of Ageing. Chichester: Wiley.
Zanetti, O., Magni, E., Binetti, G., Bianchetti, A. and Trabucchi, M. (1994) ‘Is procedural memory
stimulation effective in Alzheimer’s disease?’ International Journal of Geriatric Psychiatry 9,
1006–1007.

Further Reading and related references

Clare, L. (2002) ‘We’ll fight it as long as we can: coping with the onset of Alzheimer’s disease.’ Aging
and Mental Health 6, 139–148.
Clare, L. (2003) ‘Cognitive training and cognitive rehabilitation for people with early-stage
dementia.’ Reviews in Clinical Gerontology 13, 75–83.
Clare, L. (2003) ‘Managing threats to self: awareness in early-stage Alzheimer’s disease.’ Social Science
and Medicine 57, 1017–1029.
Clare, L. (2004) ‘Assessment and Intervention in Dementia of Alzheimer Type.’ In A.D. Baddeley,
B.A. Wilson and M. Kopelman (eds) The Essential Handbook of Memory Disorders for Clinicians.
Chichester: Wiley.
Clare, L. (2004) ‘Cognitive Rehabilitation for People with Early-stage Dementia.’ In M.T. Marshall
(ed.) Perspectives on Rehabilitation and Dementia. London: Jessica Kingsley Publishers.
Clare, L. (2005) ‘Cognitive Rehabilitation in Early-stage Dementia: Evidence, Practice and Future
Directions.’ In P. Halligan and D. Wade (eds) Evidence for the Effectiveness of Cognitive Rehabilitation.
Oxford: Oxford University Press.
Clare, L. and Cox, S. (2003) ‘Improving service approaches and outcomes for people with complex
needs through consultation and involvement.’ Disability and Society 18, 935–953.
Clare, L., Baddeley, A., Moniz-Cook, E.D. and Woods, R.T. (2003) ‘A quiet revolution: advances in
the understanding of dementia.’ The Psychologist 16, 250–254.
Clare, L., Wilson, B.A., Carter, G., Roth, I. and Hodges, J.R. (2002) ‘Relearning of face–name
associations in early-stage Alzheimer’s disease.’ Neuropsychology 16, 538–547.
Clare, L., Wilson, B.A., Carter, G., Roth, I. and Hodges, J.R. (2002) ‘Assessing awareness in
early-stage Alzheimer’s disease: development and piloting of the Memory Awareness Rating
Scale.’ Neuropsychological Rehabilitation 12, 341–362.
Clare, L., Wilson, B.A., Carter, G., Breen, K., Berrios, G.E. and Hodges, J.R. (2002) ‘Depression and
anxiety in memory clinic attenders and their carers: implications for evaluating the effectiveness
of cognitive rehabilitation interventions.’ International Journal of Geriatric Psychiatry 17, 962–967.
80 Early Psychosocial Interventions in Dementia

Clare, L., Wilson, B.A., Carter, G. and Hodges, J.R. (2003) ‘Cognitive rehabilitation as a component
of early intervention in dementia: a single case study.’ Aging and Mental Health 7, 15–21.
Clare, L., Wilson, B.A., Carter, G., Roth, I. and Hodges, J.R. (2004) ‘Awareness in early-stage
Alzheimer’s disease: relationship to outcome of cognitive rehabilitation.’ Journal of Clinical and
Experimental Neuropsychology 26, 215–226.
Chapter 5

Cognitive Stimulation for

People with Mild Cognitive
Impairment and Early
Dementia
Inge Cantegreil-Kallen, Jocelyne de Rotrou
and Anne-Sophie Rigaud

Overview
Cognitive Stimulation (CS) was developed for people with early dementia at
Hôpital Broca in France. In the late 1990s it acted as the evidence base for
reality orientation in dementia, reflected in the now withdrawn Cochrane
review (Spector et al. 1998). The aim of CS is to slow down the rate of overall
cognitive decline by using a functional approach that concentrates on reinforc-
ing the cognitive ‘reserve’ capacity. CS has been used with people in early and
moderate stages of dementia. In this chapter research into cognitive stimula-
tion in France is outlined and an example of the contents of a cognitive stimu-
lation session is also described. The chapter then focuses on CS as a therapeutic
intervention in early dementia, since learning specific cognitive strategies is a
valuable way in which to delay the onset of problems. Moreover, it is suggested
that CS for people with Mild Cognitive Impairment (MCI) can, by virtue of its
goals, methods and framework, help to differentiate between those whose
condition is ‘stable’ and those considered ‘at risk’ of developing dementia.

81
82 Early Psychosocial Interventions in Dementia

The concept: definition, goals and methods

Cognitive Stimulation (CS), where parts of the brain can take over the func-
tions of other parts that may be damaged, is based on the notion of cerebral
plasticity. It aims to optimise cognitive function using a range of mental activi-
ties. These make up the treatment of memory-related concerns associated with
both normal ageing as well as conditions such as dementia. It can be described
as a global approach (see Clare and Woods 2004) that is concerned with both
cognitive factors (such as attention/concentration, orientation, different types
of memory, visual-constructive abilities, executive function, and verbal
fluency) and psychosocial factors, such as self-confidence, motivation,
socialisation, and affective states.
Cognitive Stimulation programmes are varied and often require adapting
to the target population, or to achieve the desired outcome. Programmes in
France exist for older people who complain of memory difficulties, yet
perform adequately on neuropsychological screening tests, and thus remain
within designated norms as well as people who may have Mild Cognitive Im-
pairment, i.e. those whose test performance falls slightly below the established
norm and people who present with Alzheimer-type dementia.
For older people who complain of memory loss while demonstrating
normal cognitive ability, CS offers a programme of reassurance for concerns
associated with memory difficulties, and thus enhances self-confidence
through acquisition or relearning of recall strategies. Offering stimulation for
complaints of memory difficulties in the absence of objective decline may
prevent disability, since memory difficulties can precede cognitive
deterioration.
CS programmes in France were developed in the early 1980s aimed pri-
marily at people with Alzheimer’s disease. Jocelyne de Rotrou developed a
neuropedagogical treatment for people in the early stages of Alzheimer’s
disease, whilst working in the Department of Clinical Gerontology at Broca
Hospital in Paris. Rotrou took her inspiration from the findings of
neuropedagogy, primarily practised in the United States, where the underlying
hypothesis is that people with Alzheimer’s disease can have capacity for cogni-
tive storage, and that this albeit limited capacity can be stimulated. It is sug-
gested that this cognitive ‘reserve capacity’ may allow the person with
dementia to benefit, to some extent, from cueing and memory strategies. In
Alzheimer’s disease, implicit memory, which is typically preserved for a longer
period than episodic memory, can also respond to regular stimulation. There-
fore, offering people with dementia a set of exercises that takes reserve
capacity into account allows them to maintain, for a period of time, a better
 Cognitive Stimulation for People with Mild Cognitive Impairment 83

level of cognitive performance than that of equivalent people with dementia

who do not receive cognitive stimulation. The goals of CS are twofold:
1. To preserve cognitive function for as long as possible, and thus delay
the loss of abilities and enhance performance of everyday living
activities, i.e. the ultimate goal being the preservation of a person’s
independence.
2. To increase or re-establish self-worth by improving self-confidence
and providing motivation to perform activities that require cognitive
effort.
The methods used in CS are designed to achieve these goals. Exercises are
designed to stimulate the various areas of cognition: memory, concentration,
language, executive function, spatio-temporal orientation and visuo-
constructive abilities. The person with dementia applies strategies based on
mental imagery, categorical classification and semantic (word) association,
with the aim of preserving and even improving episodic and semantic
memory, as well as consolidating implicit memory. The stimulation exercises
are developed according to the preferred interests and activities of the older
person and these are then grouped by theme. Each theme contains exercises
of different types, focusing in turn on memory, concentration, language and
executive abilities. CS thus offers an approach that incorporates the range of
domains of cognitive activity. Based on the notion that a person’s emotional
state and cognitive functioning are interdependent, this global vision of
therapy means that treatment is extended to the person’s psychosocial func-
tioning in a number of ways. First, motivation can play an important role in
intellectual functioning. Second, cognitive and psycho-affective functions
influence social circumstances for the person with dementia and this includes
involvement in family activities, and participation and maintenance of social
relationships. CS thus focuses on oral expression in a group setting and
sessions are organised in groups of eight to ten people, led by a psychologist
trained in cognitive stimulation techniques. Groups meet weekly for one and
a half hours over a period of 12 weeks. This framework allows the person
with dementia to meet others with similar difficulties and can help the
person to reduce anxiety about his or her own situation. Table 5.1 presents
an example of a Cognitive Stimulation session.
84 Early Psychosocial Interventions in Dementia

Table 5.1 Contents of a Cognitive Stimulation session

Exercises Objectives (cognitive and Daily life application
psychosocial)
Diary
• Reinforcing sense of • Active participation in
• Participants present identity and family and social life.
themselves and report self-awareness.
what they have done in
• Reinforcing episodic
the past week. memory.
• Reduction of apathy.
Newspaper review
• Reinforcing socialisation • Facilitating oral
• Participants report on (increasing the feeling of expression and
current (national and participating in communication.
international) political, community life). • Increasing interest in
economical, social,
• Reinforcing semantic social events and in what
cultural, news and sport memory and verbal is going on in society.
events. fluency. • Reinforcing the feeling of
• Reduction of social belonging to a group.
withdrawal.
Temporal/spatial orientation
• Temporal and spatial • Preserving autonomy in
• Date, day of the week, reorientation. finding locations (e.g.
season, anniversaries, shops, post office, bank,
• Emphasising topographic
holidays. memory. etc.).
• Participants describe the
• Emphasising biographic
route and modes of memory.
transport they take to get
to the hospital (e.g.
underground stations, bus
routes, etc.).
• Recall of address and
telephone number of the
hospital.
Semantic categorisation
• Exercising functional • Improving oral expression
• Reading of a text. competences: and writing.
• Classification of ideas or ° naming • Translating ideas into
significant words. ° verbal organisation adequate verbal
• expression.
Construction of ° imagination
associations of learned
° reinforcing implicit • Finding synonyms.
words with current issues word learning. • Spontaneous decision
or a particular theme. making.
• Contextual encoding (e.g.
• Implicit automatic
writing sentences using information processing.
the just learned words in
order to memorise them).
Recall
• Applying strategies used • Spontaneously using
• Immediate free recall. at encoding. strategies in everyday life
• Cued recall of the situations.
learned items.
 Cognitive Stimulation for People with Mild Cognitive Impairment 85

Exercises Objectives (cognitive and Daily life application

psychosocial)
Executive function (linked to Improvement of: Daily life executive skills:
memory exercises):
• Mental control: inhibition • Preparing a dish, paying
• Problem-solving. of irrelevant information. an invoice, understanding
• Arithmetic (e.g. mental • Judgement. a ‘direction for use’.
arithmetic, calculation of
distances).
• Planning.

• Attention/concentration
• Abstract and logical
reasoning.
(looking for differences,
errors in sequences of • Mental flexibility.
items). • Decision-making
• Logical and abstract competence.
thinking.
Delayed recall
• Applying strategies used • Spontaneously using
• Free or cued recall of the at encoding. strategies in everyday life
learned items. situations.
• Maintenance of employed
strategy after interruption.
Homework
• Maintaining social • Stimulating interest and
• Instructions about involvement by current motivation for intellectual
exercises participants affairs. tasks.
have to do at home.
• Provide encouragement
and motivation to read
newspapers.

Evidence for Cognitive Stimulation as a

therapeutic method in France
Cognitive Stimulation programmes designed for different types of individual
presentation have been evaluated. For example, one study with 61 participants
with normal cognitive functioning who reported memory loss found that the
CS group had a statistically significant improvement compared with a
‘non-stimulation’ group, (p<0.05) on an associative memory test, i.e. the
strongest measure of the wide-ranging strategies developed in the Cognitive
Stimulation programme (Cimétière 1997). A study of the psychosocial
benefits of CS with 124 ‘normal functioning’ participants who reported
memory loss (de Rotrou, Cantegreil-Kallen and Cimétière 2000), found a sig-
nificant improvement (p<0.05) on two items of a self-evaluation scale of
well-being (i.e. the importance that the person gave to his or her role in society,
and the amount of interest he or she displayed in current events). Cognitive
Stimulation did not impact on most other functions apart from two items
relating to memory (i.e. remembering where certain objects were placed, and
remembering a shopping list) where a statistically significant improvement
was observed in individuals who had been stimulated (de Rotrou et al. 2000).
The CS programme designed for people with Alzheimer’s disease has
been evaluated by several control studies. The double-blind randomised
86 Early Psychosocial Interventions in Dementia

controlled trial (Breuil et al. 1994) was seen as a key study for the evidence base
of reality orientation in dementia in Spector and her colleagues’ meta-analysis
of the success of therapy based on reality orientation in people with dementia
(Spector et al. 1998). The study consisted of 56 patients who were living at
home, and demonstrated clear cognitive improvement in favour of the CS
group, with statistically significant outcomes on episodic memory (p<0.01),
and in particular on the recall of a list of words (p<0.009), as well as on
spatio-temporal orientation. No differences between groups were noted on
fluency tests and overall changes in cognition were not accompanied by im-
provements in activities of daily living or in behaviour. Another controlled
study of 82 people with severe Alzheimer’s disease living in a home facility
showed a significant improvement (p<0.01) on the MMSE (two points) in
favour of the stimulated group and a trend towards fewer day-to-day problems
(Vidal et al. 1998).
Gosselin and colleagues evaluated the effectiveness of Cognitive Stimula-
tion on behavioural outcomes by incorporating Cognitive Stimulation into a
daily treatment programme for 29 institutionalised participants with severe
Alzheimer’s disease (Gosselin et al. 2003). They noted significant improve-
ments in appetite and eating behaviour with associated reduction in distress
among staff who were helping people at mealtimes.

New directions for Cognitive Stimulation in

Mild Cognitive Impairment
MCI is a state that is thought by some to precede a diagnosis of dementia, since
the person presents with reduced mnemonic (memory) or cognitive abilities,
which do not impact on daily activities or meet the criteria for dementia. The
concept of MCI is still in its infancy, but criteria include performance at 1.5
standard deviations below the age-scaled mean on neuropsychological tests, a
Clinical Dementia Rating (CDR) score of <0.5 or a Global Deterioration Scale
(GDS) of <3.0. Although people with MCI are considered to be an ‘at risk’
population, only a proportion go on to develop dementia, with the most fre-
quently quoted statistics issued by the Mayo Clinic as 15 to 20 per cent each
year (Petersen et al. 1999), although figures of 50 per cent progression in three
to four years (Cameron and Clare 2004) and 31 per cent in three years (Zanetti
et al. 2006) have been quoted. Identifying people with MCI who are ‘at risk’ of
developing dementia is not easy, since the term reflects a heterogeneous condi-
tion of subsets where memory problem MCI is seen as the pre-clinical stage of
Alzheimer’s disease and multiple impaired cognitive problems associated with
vascular dementia or MCI-VaD (Zanetti et al. 2006). Amnestic-MCI refers to
deficits of memory and is associated with Alzheimer’s disease, since the hippo-
 Cognitive Stimulation for People with Mild Cognitive Impairment 87

campus and related temporal medial lobe structures which are associated with
memory function are also seen as the initial sites of neurodegeneration in Alz-
heimer’s disease. MCI is associated with deficits in the executive system
(Zanetti et al. 2006). Deficits can be seen in problem solving, abstract thinking,
attention, loss of mental flexibility, response inhibition and visuospatial tasks,
all of which are associated with the frontal lobe (Albert 2002).
CS can contribute to research and a better understanding of MCI as a
pre-clinical dementia state (Cantegreil-Kallen et al. 2002) in two ways: first, by
exploring the potential of CS acting on cognitive reserve capacity to reduce
the risk of progressing to dementia; second, to enhance the predictive value of
early detection of Alzheimer’s disease in MCI. The aim of the former would be
to slow down the rate of overall cognitive decline and possibly delay the onset
of disabling symptoms based on the notion that reserve capacity and plasticity
of the human brain account for variability in the performance of cognitive ac-
tivities. Since the risk of dementia is significantly increased among people
with clear cognitive impairment beyond memory loss (Bozoki et al. 2001), i.e.
they show more global cognitive impairment and exhibit episodic mnemonic
deficits, there may be benefit in exploring the potential of CS in delaying the
onset of dementia. CS involves practice at encoding and retrieval requiring
some intact learning resources or reserve capacity. Early detection of dementia
and subtypes is hypothetically possible within longitudinal studies, since lack
of response to Cognitive Stimulation as measured by fine grained
neuropsychological testing in memory, language, visuospatial ability and the
range of executive functions may offer predictive potential. However, whilst
there are neuropsychological tests of adequate sensitivity for early memory
loss, e.g. the Profile of Cognitive Efficiency test (de Rotrou et al. 1991),
measures of subtle changes in the executive functioning remain elusive.

Developing a CS programme for people

with MCI
The benefits of CS are both the overall framework of the programme and the
content of the specific exercises. The framework consists of weekly sessions
with a psychologist who observes performances in terms of both the cognitive
procedures used by the person and the contribution of the person’s affective
state on performance. Thus, the manner in which the person processes, learns
and recalls information can provide information on the nature of the underly-
ing deficit. The 12-week programme also allows observation of subtle
functional and behavioural changes, since people with MCI present with an
‘emotional vulnerability syndrome’. That is, they tend to visit their general
practitioner more often than those who do not have MCI, suffer more
88 Early Psychosocial Interventions in Dementia

frequently from (mild) depression and are significantly more vulnerable to

stress or are dependent on their family and friends (Verhey and Visser 2000).
In addition to within-session monitoring, the final outcome of a 12-week
programme can also therefore be examined by particular neuropsychological
subtests and self-report responses to questionnaires about affective state or
mood.
The specific exercises that make up the programme are focused on four
MCI cognitive characteristics that may or may not be of pre-clinical Alzhei-
mer’s disease (we refer to these as the ‘at risk’ MCI group), or may also serve to
enhance cognitive reserve in those with MCI who do not progress to a
dementia (referred to here as the ‘stable’ MCI group). These four MCI func-
tional domains are diminished delayed recall, diminished category verbal
fluency, diminished logical memory (i.e. paragraph recall) and diminished as-
sociative memory. Below we outline how particular cognitive exercises may
help in the detection of early dementia or the delay of dementia through the
maximising of cognitive reserve.
First, diminished delayed recall: this is the most common predictor of
dementia and is also common in MCI, but free recall in episodic memory
remains stable for three years, probably due to reserve capacity that allows use
of compensatory strategies (Bäckman 2002). This may therefore be worthy of
inclusion in a CS programme in MCI. Exercises targeting relearning and opti-
mising of mnemonic strategies to enhance retrieval of acquired information
may help those who do not go on to develop dementia (the ‘stable’ MCI
subset) but those who progress to dementia (the ‘at risk’ subset) are unlikely to
benefit. CS exercise performance on this task over time may add to the predic-
tive value of CS in MCI and the detection of a developing early stage dementia,
which in turn may allow opportunity for providing individual preventative
cognitive and psychosocial support programmes to both subsets of people
with MCI.
Second, diminished verbal fluency is the second most common deficit in
early dementia (Palmer et al. 2002). Diminished fluency appears to be due to a
reduced capacity to access the lexical stock (i.e. the capacity to identify strate-
gies) as well as difficulty in applying strategies (Astell and Bucks 2002).
People with MCI showing selective deficits in category fluency may therefore
be at risk of developing Alzheimer’s disease. Since category and letter fluency
have different retrieval processes, neuropsychological responses in verbal
learning and memory performance during Cognitive Stimulation exercises
might act as potential markers for detecting those who may progress to devel-
oping Alzheimer’s disease. Vocabulary exercises enrich the semantic stock as
well as the relearning of strategies for recalling words or concepts, with the
goal of improving the person’s ability to compensate when unable to recall a
word. A person’s response following use of compensation strategies in CS can
 Cognitive Stimulation for People with Mild Cognitive Impairment 89

therefore act as a marker for ‘at risk’ of dementia in MCI and thus assist with
early detection. Therapeutic potential is seen in that should the person fail to
find a word, he or she would be able to locate a synonym or a description, thus
reducing the fear of failure. This is particularly important since the anxiety of
forgetting words during conversation can contribute to social withdrawal, and
opportunity to improve efficacy early in the course of MCI may assist in
preventing depression.
Third, diminished logical memory (paragraph recall) has been identified
in people who are defined as having MCI with a Clinical Dementia Rating
(CDR) score of <0.5 (Ferris 2002). Here CS exercises on text recall involve
learning and repeating a paragraph or a very short story, where mnemonic
strategies such as categorisation and the association of mental images play an
important role in both detection (where ‘stable’ MCI and those ‘at risk’ of
dementia can be differentiated) and memory improvement interventions.
Finally, diminished associative memory (i.e. the ability to learn associated
words) is thought to differentiate those who remain stable from those who go
on to develop dementia (Blackwell, Sahakian and Versey 2002). Pinpointing
those who may be ‘at risk’ of dementia in a CS session may therefore be
possible using observation of the degree to which the person is capable of ben-
efiting from cueing, since this mechanism acts as an evaluative barometer for
storage capacity, and the potential underlying disease process.

Conclusion and implications for future

research
The evidence base for CS in maintaining cognition and psychological
well-being in early stage dementia was developed in France (de Rotrou 2001;
de Rotrou et al. 2002). It is now a recommended group treatment for people
with mild to moderate dementia where treatment is offered in day centres and
care homes (see Moniz-Cook 2006 for an overview). Further research should
examine exactly which cognitive and psychological features of Cognitive
Stimulation intervention are particularly effective, and what (sub)groups of
patients benefit most from it. For instance, it is still not known whether the
benefits derive mainly from the cognition-focused components, or the social
interaction that is a key part of the intervention (Clare and Woods 2004). We
outlined in this chapter how CS may contribute to the detection of a develop-
ing dementia and early support of people who meet the criteria of MCI, irre-
spective of whether they are at risk of dementia or not.
CS in MCI can, by virtue of its goals, methods and framework, contribute
to our ability to differentiate between those who are ‘stable’ or ‘at risk’ of de-
veloping dementia, through careful observation by a psychologist of
90 Early Psychosocial Interventions in Dementia

within-session performance. This, combined with detailed neuro-

psychological testing repeated over time, has the potential for the detection of
early Alzheimer’s disease.
As a preventative treatment for dementia, CS as an intervention constitutes
learning specific cognitive strategies that may delay the onset of dementia
through maximising cognitive reserve capacity, or defer the onset of symptoms
since it also takes into account the person, the family and the social environ-
ment. Therefore CS in MCI may have a dual role in the prevention of
dementia. First, it can help prevent extra burden on cognition in MCI, irrespec-
tive of whether the person is at risk of developing dementia, and may thus
indirectly reduce the risk of further cognitive decline and the onset of
dementia. Second, if CS can be used to enhance efficacy in MCI as well as
assist people and families to maintain their lifestyle, it may be possible to delay
the deteriorative impact on behaviour and daily functioning as dementia
develops in those at risk. A review of the evidence for CS and other cogni-
tion-orientated, non-pharmacological interventions in MCI is currently under
way (Cameron and Clare 2004). A nationwide controlled randomised trial (N
= 1000) comparing CS, cognitive rehabilitation, reminiscence and an individ-
ual personally tailored intervention ‘à la carte’ is currently under way in France
(Amieva 2006). It aims to evaluate the relative effectiveness of these four
psychosocial interventions in mild and moderate Alzheimer’s disease, with the
primary outcome set at the delay of conversion into moderate-severe and
severe dementia. The hypothesis of the investigators is that people with early
stage dementia who benefit from one of the four interventions during three
months (one and a half hours weekly) will be significantly less at risk of pro-
gression to a severe dementia, at 24 months follow-up, compared to those in a
control group who did not receive any of the four interventions (Dartigues and
Amieva 2006).

References
Albert, M. (2002) ‘Preclinical prediction of Alzheimer’s disease.’ Neurobiology of Aging 23, S561.
Amieva, H. (2006) ‘National evaluation programme on Cognitive Stimulation, cognitive
rehabilitation and reminiscence.’ Paper presented at 7th Annual INTERDEM Meeting,
Fondation Médéric Alzheimer, 29 June, Paris.
Astell, A. and Bucks, R. (2002) ‘Category fluency in AD: generation from common and ad hoc
categories.’ Paper presented at 8th International Conference on Alzheimer’s Disease and Related
Disorders (abstract 974), Stockholm.
Bäckman, L. (2002) ‘The cognitive transition to Alzheimer’s disease.’ Paper presented at 8th
International Conference on Alzheimer’s Disease and Related Disorders (abstract 1052),
Stockholm.
Blackwell, A., Sahakian, B. and Versey, R. (2002) ‘Early detection of Alzheimer’s disease using
neuropsychological assessment: paired associates learning and graded naming.’ Paper presented
at 8th International Conference on Alzheimer’s Disease and Related Disorders (abstract 143),
Stockholm.
 Cognitive Stimulation for People with Mild Cognitive Impairment 91

Bozoki, A., Giordiani, B., Heidebrink, J.L., Berent, S. and Foster, N.L. (2001) ‘Mild cognitive
Impairment predicts dementia in non-demented elderly patients with memory loss.’ Archives of
Neurology 58, 411–416.
Breuil, V., de Rotrou, J., Forette, F., Tortrat, D., Ganansia-Ganem, A. and Frambourt, A. (1994)
‘Cognitive Stimulation of patients with dementia. Preliminary results.’ International Journal of
Geriatric Psychiatry 9, 211–217.
Cameron, M.H. and Clare, L. (2004) ‘Cognition-based interventions for people with Mild Cognitive
impairment (protocol).’ Cochrane Database of Systematic Reviews, Issue 2. Chichester: Wiley.
Cantegreil-Kallen, I., de Rotrou, J., Gosselin, A., Wenisch, E. and Rigaud, A.S. (2002) ‘The role of
Cognitive Stimulation in diagnosing Mild-Cognitive-Impairment subjects at risk for
Alzheimer-type dementia.’ Brain Aging 2, 15–19.
Cimétière, C. (1997) Evaluation d’une prise en charge de la plainte mnésique chez l’adulte âgé. Mémoire de
DESS de Psychologie du développement. Université de Caen. Caen: UFR des Sciences de la vie
et du comportement.
Clare, L. and Woods, R.T. (2004) ‘Cognitive training and cognitive rehabilitation for people with
early-stage Alzheimer’s disease: a review.’ Neuropsychological Rehabilitation 14, 385–401.
Dartigues, J.F. and Amieva, H. (2006) Essai clinique prospectif comparatif, multicentrique, randomisé, sans
insu évaluant quatre thérapies non-médicamenteuses dans la maladie d’Alzheimer. Protocole d’étude
clinique, version n00.1 20/09/2006. Bordeaux: Centre Hospitalier Universitaire de Bordeaux.
de Rotrou, J. (2001) ‘Stimulation et éducation cognitives. Le vieillissement cérébral.’ Gérontologie et
Société 97, 175–192.
de Rotrou, J., Cantegreil-Kallen, I. and Cimétière, C. (2000) ‘Evaluation du memo-sénior.’ Rapport
pour la Fondation Nationale de Gérontologie (France).
de Rotrou, J., Cantegreil-Kallen, I., Gosselin, A., Wenisch, E. and Rigaud, A.S. (2002) ‘Cognitive
Stimulation: a new approach for Alzheimer’s disease management.’ Brain Aging 2, 48–53.
de Rotrou, J., Forette, F., Tortrat, D., Fermanian, J., Hervy, M.P., Boudou, M.R. and Boller, F. (1991)
‘Cognitive efficiency profile, description and validation in patients with Alzheimer’s disease.’
International Journal of Geriatric Psychiatry 6, 501–509.
Ferris, S. (2002) ‘Monitoring cognition across the spectrum of AD.’ Paper presented at 8th
International Conference on Alzheimer’s Disease and Related Disorders (abstract 1053),
Stockholm.
Gosselin, A., de Rotrou, J., Cantegreil-Kallen, I., Wenisch, E., Moulin, C., Bourrellis, C. and Rigaud,
A.S. (2003) ‘Bénéfices d’une prise en charge globale sure les troubles comportementaux des
patients dements institutionalisés.’ In L’Année Gérontologique. Santé et maison de retraite, Vol. IV.
Paris: Editions Serdi.
Moniz-Cook, E. (2006) ‘Cognitive Stimulation and dementia.’ Aging and Mental Health 10, 207–210.
Palmer, K., Bäckman, L., Winblad, B. and Fratiglioni, L. (2002) ‘Cognitive impairment, no dementia:
is it possible to identify, with high predictivity, subjects at risk of developing dementia in the
general population?’ Paper presented at 8th International Conference on Alzheimer’s Disease
and Related Disorders (abstract 1081), Stockholm.
Petersen, R., Smith, G., Waring, S., Ivnik, R., Tangelos, E. and Kokmen, E. (1999) ‘Mild cognitive
impairment: clinical characterization and outcome.’ Archives of Neurology 56, 303–308.
Spector, A., Orrell, M., Davies, S. and Woods, B. (1998) ‘Reality orientation for dementia: a review of
the evidence for its effectiveness.’ The Cochrane Library Database – Systematic Reviews, Issue 4.
Chichester: Wiley.
Verhey, F. and Visser, P. (2000) ‘The phenomenology of depression in dementia.’ International
Psychogeriatrics 12, 129–134.
Vidal, J.C., Lavieille-Letan, S., Fleury, A. and de Rotrou, J. (1998) ‘Stimulation cognitive et
psychosociale des patients déments en institution.’ La revue de Gériatrie 23, 199–204.
Zanetti, M., Ballabio, C., Abbate, C., Cutaia, C., Vergani, C. and Bergamaschini, L. (2006) ‘Mild
cognitive impairment subtypes and vascular dementia in community-dwelling elderly people: a
3-year follow-up study.’ Journal of the American Geriatrics Society 54, 580–586.

Further reading and related references

de Rotrou, J., Wenisch, E., Chausson, C., Dray, F., Faucounau, V. and Rigaud, A.S. (2005) ‘Accidental
MCI in healthy subjects: a prospective longitudinal study.’ European Journal of Neurology 12,
879–885.
Farinamd, E., Mantovani, F., Fioravanti, R., Pignatti, R., et al. (2006) ‘Evaluating two group
programmes of cognitive training in mild to moderate AD: Is there any difference between
“global” stimulation and a cognitive-specific one?’ Aging and Mental Health 10, 211–218.
Knapp, M., Thorgrimsen, L., Patel, A., Spector, A., et al. (2006) ‘Cognitive Stimulation therapy for
people with dementia: cost effectiveness analysis.’ British Journal of Psychiatry 188, 574–580.
92 Early Psychosocial Interventions in Dementia

Spector, A., Davies, S., Woods, R.T. and Orrell, M. (2002) ‘Reality orientation for dementia: a
systematic review of the evidence for its effectiveness.’ Gerontologist 40, 206–212.
Spector, A., Orrell, M., Davies, S. and Woods, R.T. (2001) ‘Can reality orientation be rehabilitated?
Development and piloting of an evidence-based programme of cognition-based therapies for
people with dementia.’ Neuropsychological Rehabilitation 11, 377–397.
Spector, A., Thorgrimsen, L., Woods, R.T., Royan, L., et al. (2003) ‘Efficacy of an evidence-based
Cognitive Stimulation therapy programme for people with dementia: randomised controlled
trial.’ British Journal of Psychiatry 183, 248–254.
Spector, A., Thorgrimsen, L., Woods, R.T. and Orrell, M. (2006) Making a Difference: An Evidence Based
Group Programme to Offer Cognitive Stimulation Therapy (CST) to People with Dementia. A Manual for
Group Leaders. London: Hawker Publications.
Woods, B., Thorgrimsen, L., Spector, A., Royan, L. and Orrell, M. (2006) ‘Improved quality of life
and Cognitive Stimulation therapy in dementia.’ Aging and Mental Health 10, 219–226.
Chapter 6

GRADIOR
A Personalised Computer-based
Cognitive Training Programme
for Early Intervention in Dementia
Manuel Franco, Kate Jones,
Bob Woods and Pablo Gomez

Overview
The use of computer technology for rehabilitation in dementia is developing,
with a recent pilot randomised study from Spain indicating that multimedia
based cognitive stimulation shows promise (Tárraga et al. 2006). One such
example of computer technology has been developed by a team in northern
Spain and used in Wales. This used a specialised computerised programme to
assist in cognitive rehabilitation. The programme generated personalised exer-
cises for cognitive training using a compensation perspective to focus on
neuropsychological functions and preserved abilities. This has promise as a
new tool in early intervention and shows flexibility for use in both urban and
rural settings. This chapter outlines a rationale for computer-based
neuropsychological rehabilitation programmes in early dementia and the de-
velopment of this particular system called GRADIOR, in Spain. The applica-
tion of GRADIOR as part of dementia treatment in Spain and Wales is
described using two case studies.

Background
Cognitive rehabilitation for people with dementia uses strategies to either
compensate for, or to restore, lost function, particularly in respect of memory
deficits. Compensation strategies often use external or environmental aids

93
94 Early Psychosocial Interventions in Dementia

such as diaries and alarm clocks. Strategies for the restoration of lost function
use techniques designed to stimulate deficient mnemonic abilities through re-
petitive practice, based on the idea that practice can improve the retention of
information. The rationale underpinning repetitive practice techniques origi-
nated from the idea that the brain can be likened to a mental muscle, and that
repetitive mental exercise can strengthen and restore functional deficits.
However, effects for people with early dementia tend to be limited and specific
to the material that is being processed, with little evidence that improvements
generalise to everyday functioning. Thus, whilst repetitive practice using
meaningless stimuli is of limited benefit in memory rehabilitation, repetition
or rehearsal techniques have been used to good effect for certain types of infor-
mation. For example, the spaced retrieval technique developed by Landauer
and Bjork (1978) involves repeated rehearsal of the ‘to be learned information’
over increasing delay periods. This technique has been used successfully with
people with Alzheimer’s disease who learned names and the location of
objects and retained this knowledge for several weeks (see, for example, Camp
1989; Camp and McKitrick 1992).
The advent of the computer age has brought a growing interest in the ap-
plicability and efficacy of computer-based rehabilitation training including, in
recent years, application in the rehabilitation of older people with organic
brain disease (Matthews, Harley and Malec 1991). A number of computer
systems have been developed for such rehabilitation. Panza et al. (1996) used a
computer programme that included exercises specifically designed to train and
test different facets of memory such as prospective, working, verbal and
visuospatial memory using a touch screen monitor. Significant improvement
on memory test scores (immediate and delayed memory) were found for
people with dementia at the end of the 12-week intervention period.
Hofmann, Hock and Müller-Spahn (1996) also found positive effects of an in-
teractive computer-based programme that trained people with mild to
moderate Alzheimer’s disease. Using photographs of the person with
dementia and his or her personal surroundings, an everyday task of relevance
to the person was simulated on a PC touch screen, which the patient was
trained to operate. After three weeks of training (three to four sessions a week),
people needed less help in performing the programmes, they became faster,
and the majority made fewer mistakes. Although the training was generally
well received, there was no evidence of a general cognitive improvement, and
it was uncertain as to whether the results could be transferred to real-life
situations.
Positive effects of computer-based rehabilitation were also reported by
Schreiber et al. (1999) for people with mild to moderate dementia undergoing
a training programme designed to improve immediate and delayed retention
 GRADIOR: A Personalised Computer-based Cognitive Training Programme 95

of objects and routes. The computer tasks simulated real life situations, for
example, finding objects in a room, route finding in a virtual house and per-
forming everyday actions such as making a cup of coffee. Training comprised
ten 30-minute computer-based sessions with a therapist present to assist where
necessary. Members of the control group met with a psychologist in order to
control for social stimulation across the two groups and all participants were
assessed pre and post test using a variety of neuropsychological tests. The ex-
perimental group showed significant improvements on measures of retention
of meaningful material and topographical information compared to the
control group. However, there were no improvements in retention of meaning-
less information. This suggested that improvements were domain specific as
targeted by the retraining programme. In addition, generalisation to real-life
settings was reported for some people, who were verbally provided with a
route and were then able to go for a walk and remember the route. The authors
argued that cognitive retraining programmes with high ecological validity
may facilitate the transfer of cognitive improvements from training to real-life
situations.
The effects of cognitive retraining have been found to generalise to broad
areas of memory and thinking (Butti et al. 1998). Using a multimedia format
presenting visual and auditory stimuli that focused on the development of a
training package specific to a particular individual, 12 people with vascular
dementia participated in five hours cognitive training per week, for ten weeks.
Following a period of nine months without training, people once again
attended 50 hours of training spaced over ten weeks. Neuropsychological
testing was carried out before and after the two training episodes. The
programme itself consisted of general attention and memory tasks. Memory
and attention exercises were delivered at several levels of difficulty. Once the
existing performance levels were established, people were encouraged to
attempt the next level of difficulty, thus attempting to train individuals to the
limit of their cognitive ability (Butti et al. 1998). There were significant im-
provements in logical memory, visual reproduction and paired associate
learning, although this was not maintained at follow-up. A recent pilot ran-
domised clinical trial involving 46 people with Alzheimer’s disease from
Barcelona, Spain (Tárraga et al. 2006) used an Interactive Multimedia Cogni-
tive Stimulation (IMCS) programme called Smartbrain. Participants in the
study attended a psychomotor stimulation day care centre and were taking
a cholinesterase inhibitor (ChEI). They received a total of 72 multime-
dia sessions, three times a week lasting a maximum of 25 minutes, over
24 weeks. IMCS was compared with an equivalent group who received Cogni-
tive Psychomotor Stimulation (CPS) at the day care setting and a group
that received ChEI alone. At 24-week follow-up the groups who received
96 Early Psychosocial Interventions in Dementia

cognitive stimulation performed better than the ChEI only group on measures
of cognition and the group who received additional multimedia cognitive
training showed superior outcomes for cognition.
Although memory training may have potential in early dementia
support (Bäckman 1992), especially if tailored to the needs and environment
of the individual, difficulties exist when introducing such programmes in
clinical settings. First, programmes can be seen as costly on therapist time
and therefore too expensive to justify. Second, applying a programme can
require specific skills and specialised training, as not all psychologists, physi-
cians or occupational therapists may have the knowledge or experience
needed. Third, in Spain at least, there are few qualified specialists, so devel-
oping a specialised neuropsychological rehabilitation service is difficult.
Fourth, there are few theoretically based cognitive training programmes.
Fifth, comparison of the best method of maintaining gains at follow-up is
not easy to establish. Sixth, when people live some distance from the service,
for example, in a rural area, it can be difficult to follow them up and maintain
the programme. Finally, the progressive nature of cognitive impairment in
people with dementia can impact on professionals who may become over-
whelmed by the numbers of people affected. The increasing numbers of
older people with dementia that are detected can result in demands for more
time for neuropsychological assessment and reporting results, which may
ultimately lead to burnout among practitioners (Brooks et al. 1999). Box 6.1
outlines what may be needed by developing neuropsychological rehabilita-
tion programmes in dementia to overcome these obstacles.

Box 6.1 Overcoming practical obstacles

to the application of neuropsychological
rehabilitation programmes in dementia

A programme should be:

Flexible Useful for people at many different levels of cognitive impairment.
Open The programme must be able to easily incorporate any new advances in
neuropsychological rehabilitation.
Simple The programme will need to be applied by those without special qualifications in this
area, such as nurses and care workers, so that the neuropsychologist is required only
to set up the therapy programme and evaluate its effects.
Available The programme needs to be accessible and made available for both urban and rural
community care services.
Affordable The programme needs to be inexpensive if its use is to be encouraged.
Useful The programme must have meaning for the person with dementia and carer and be
effective.
 GRADIOR: A Personalised Computer-based Cognitive Training Programme 97

Computer-based programmes can meet most of these characteristics and have

the following advantages in cognitive stimulation (Seron and Lories 1996):
• Cognitive exercises can be set up and switched on automatically,
with varied trials generated by the computer, thus reducing
boredom for staff and users.
• Computers are able to give feedback immediately after the user’s
response, which can enhance motivation.
• Because the user can continue the training at home, more
extensive training becomes possible. A computer is needed which
can be managed online, so that even those who live far from the
specialist rehabilitation centre can participate.
However, computers do have their problems (Matthews et al. 1991; Olbrich
1996; Robertson 1990), not least compatibility issues between different types
of software and hardware. In addition, many computer-based rehabilitation
programmes are often too rigid to allow modification of cognitive exercises, or
there are constraints due to what the programme has been specifically
designed to do. Therefore it can be difficult to adapt the memory training to an
individual’s specific cognitive impairment, without involving a computer spe-
cialist. Furthermore, the programmes themselves can be expensive to buy, thus
maintaining the perceived high cost of neuropsychological rehabilitation.

The development of GRADIOR

1
GRADIOR was developed by the INTRAS Foundation in Spain to overcome
some of the obstacles to cognitive training in dementia outlined above.
GRADIOR is a multimedia system specifically designed for cognitive assess-
ment and neuropsychological rehabilitation which requires only a standard
multimedia computer and touch screen (Franco et al. 2000). The user does not
therefore need knowledge of how to operate a computer since responses are
made via the touch screen. The system can be used in both urban and rural
areas, and has been developed to enhance flexibility, new knowledge, use by
any practitioner, affordability and utility. It is based on the principle of com-
pensation, i.e. focusing on neuropsychological functions that are still pre-
served or on those that have least deteriorated. In this way, rehabilitation does
not focus exclusively on deficiencies or loss, but more on the abilities which the
person has already developed. The programme can be graded and totally per-
sonalised, taking into account both environmental and emotional factors.
The GRADIOR system includes three modules as follows:
98 Early Psychosocial Interventions in Dementia

1. The exercise generator.

° The therapist can build specific, individualised exercises for

cognitive training.
2. The clinic manager programme.

° The therapist collects general clinical information on the

person with dementia: socio-demographic details, treatments
and scores on assessment measures (for example, the Mini
Mental State Exam, MMSE; Barthel Index).

° In designing the treatment, the therapist chooses the specific

cognitive exercises for the individual and the number
required, and establishes the level of difficulty of every
exercise. In this way, the therapist can therefore personalise
the memory training to each person’s strengths and needs.

° Verbal and auditory feedback (negative, positive and neutral)

are automatically provided throughout each trial and the data
are automatically stored for each person, allowing later access
to information about each session, together with responses to
individual trials. This report facility allows the therapist to
evaluate the rehabilitation programme.
3. The cognitive training application.

° The person with dementia works with the computer and carries
out different exercises as part of the rehabilitation session.

° Using a standard set of exercises, it is also possible to carry

out a neuropsychological assessment or reassessment.
The system contains a wide variety of exercises designed to tap into distinct
cognitive domains including memory, attention, perception and language.
Within each cognitive domain the exercises are graded in level of difficulty by
manipulation of the number of stimuli, presentation time and inter-stimulus
interval. The system separates the content of the exercises from the cognitive
activities to be practised. It has a wide selection of pictures, images, sounds and
phrases which can be included in different exercises. Each cognitive activity or
function is related to an exercise (i.e. practice) module and there is provision for
the therapist to build in individually tailored exercises by linking the specific
content (for example, the picture, sounds and instructions) with the exercise
module. The system then generates the exercises (see Box 6.2). Exercises of
varying difficulties can be incorporated into a session that can be tailored to
 GRADIOR: A Personalised Computer-based Cognitive Training Programme 99

the individual, and stimuli can be added that are personally relevant (for
example, familiar faces, events or places).

Box 6.2 Example of how the GRADIOR system works

· In the first module, the therapist can generate up to 1000
selective attention exercises.
· In the second module, the same or another therapist may
choose the specific exercises for the person depending on
the cognitive level, specific features and other clinical
symptoms. For example, perhaps only 90 exercises may fulfil
the specific conditions or personal needs of an individual.
· In the third module, the person performs the specific
rehabilitation session in which the 90 exercises are run
randomly, until either the person has completed all the
selected exercises, when the system begins again, or the
selected duration of the session (for example, 20 minutes)
has been reached.

Application of GRADIOR
Originally developed and used in Spain at the INTRAS Foundation, the
programme has also been adapted for use in the UK at the University of Wales,
Bangor. In Spain it has been used to improve the quality of neuropsychological
assessment that in turn can target particular cognitive strengths and needs of
the person with dementia in cognitive rehabilitation. In Wales it has also been
used for developing cognitive stimulation training activity programmes.
Computer-based rehabilitation and outcomes using GRADIOR in two studies
from Spain and Wales are described in the following sections of this chapter.

Case example – Adam (Spain)

Adam, aged 77, arrived at the service seeking help with memory and
concentration difficulties. He felt these hindered some of his everyday
activities and he described his poor performance at his weekend job,
which required him to receive telephone calls and take currency-
changing orders solicited by various city firms. He observed that the order
forms would become increasingly full of ink blots and he needed to repeat
the operation many times to take the ‘message’ correctly. He also
reported symptoms of slight dizziness at specific moments, for example,
when going up the stairs, and that relatives had begun to note slight
100 Early Psychosocial Interventions in Dementia

absentmindedness which, without interfering too much in everyday life,

was nonetheless significant. At the first session, subclinical depressive
symptoms of one year duration were noted, probably associated with
Adam’s subjective feeling of being incapable due to initial forgetfulness,
and later with a more notable functional memory loss.
An exhaustive analysis of his presenting symptoms was undertaken
based on organic neuropsychological protocols. Medical explorations
included routine blood and urine tests, electroencephalography (EEG)
and computerised tomography (CT) scan, all of which were normal.
Neuropsychological exploration also provided a baseline assessment
prior to cognitive rehabilitation. A number of cognitive tests were used in
this initial evaluation including the: Mini Cognitive Examination (Lobo et
al., 1979, 1980), Alzheimer’s Disease Assessment Scale (ADAS) test
(Rosen, Mohs and Davis 1984) and the Clock Drawing Test (Freeman et
al. 1994). Additionally, a series of tests aimed at assessing mood,
self-esteem, functional ability, quality of life for the patient, depression
and quality of life among the person’s relatives were used included the
Lawton Scale (Lawton and Brody 1972), Barthel Index (Mahoney and
Barthel 1965) and the Clinician’s Global Impressions (see Schneider
and Olin 1997).
The initial evaluation found evidence of mild cognitive deterioration,
mild dementia of Alzheimer type, and difficulties with independent daily
living. Alzheimer’s disease with no associated behavioural or mood
disorder was diagnosed. Adam did not wish to take an anti-dementia
drug, but used GRADIOR for a year. Box 6.3 outlines the effects of
rehabilitation with GRADIOR for Adam and his wife.

Case example – Paula (Wales)

Paula is a 72-year-old woman who was admitted to a specialist
assessment unit with memory problems that had impacted on her daily
living. She was aware of having some memory difficulties. Neuro-
psychological assessment indicated the following: her performance on
the Cambridge Cognitive Examination for Mental Disorders – Revised
(CAMCOG-R) (Roth et al. 1988) was 32/105 (the mean for someone of
this age is 88.3); MMSE (Folstein, Folstein and McHugh 1975) score
was 7/30 and she was greatly impaired on orientation and recent
memory. On tests of frontal lobe functioning Paula performed poorly on
abstract thinking and visual reasoning. Overall, the cognitive
assessment suggested that Paula had a severe impairment, with her
comprehension and expression abilities being less impaired than her
other cognitive skills. Box 6.4 describes Paula’s use of the GRADIOR
computerised rehabilitation programme.
Figure 6.1 shows that, despite Paula’s significantly reduced level of
cognitive impairment, she was able to learn how to respond
appropriately to the trials and showed consistent improvement over the
seven sessions.
 GRADIOR: A Personalised Computer-based Cognitive Training Programme 101

Box 6.3 Adam and his wife:

rehabilitation with GRADIOR
Adam participated in 25-minute GRADIOR sessions held twice weekly
for a year. The programme was personalised to domains of attention,
memory and information processing. Assessments were made at 3, 6,
9 and 12 months after commencing rehabilitation and some of the
outcome results are shown below.

RESULTS Mini ADAS test Clock Lawton Barthel Clinicians’ global

cognitive drawing impression
exam test
Non-cog. Cog. Total Evaluator Family
Baseline 24 14 9 23 16 5 95 2 2
3 months 34 17 2 2
6 months 29 16 2 18 16 5 95 2 2
9 months 33 18 2 2
12 33 12 4 16 18 5 95 2 2
months

· There were improvements in cognitive functioning reflecting

target domains.
· There were associated positive effects on everyday life,
particularly performance in carrying out his job (taking
orders by phone). Qualitative examination of the order
forms indicated that these no longer had as many ink blots
or scribbles and he reported that he did not have to repeat
the order as many times to get it right.
· His mood also improved (ADAS non-cog), probably due to
improved self-esteem (measures for mood and self-esteem
are available from first author). This appeared to have
been reinforced by his experiences of success in his
cognitive training programme and more importantly in his
everyday life, particularly his weekend job – he was pleased
with his achievements.
· There were additional positive effects on his wife’s reported
burden and the quality of her life did not worsen over the
12 months (measures are available from first author).
102 Early Psychosocial Interventions in Dementia

Box 6.4 Paula – intervention with GRADIOR

Paula participated in seven 20-minute GRADIOR sessions held twice
weekly over a four-week period. The GRADIOR programme was
presented on a PC and Microtouch software was used to activate the
touch screen. The sessions took place in a quiet office. Initially, Paula
was presented with a session comprising a mixture of level one
exercises targeting perception, memory and attention skills. During the
first session additional verbal instructions were given wherever
necessary. In subsequent sessions minimal instructions were given.

Conclusion
Interactive multimedia tools for cognitive stimulation in dementia are develop-
ing, such as the programme Smartbrain (www.educamigos.com, accessed 7
August 2008), which has 19 stimulation tasks at different levels of difficulty
across the range of cognitive domains. This has been piloted in a recent ran-
domised trial of cognitive stimulation (Tárraga et al. 2006). We have described
another such tool, GRADIOR, which extends generalised cognitive stimula-
tion to a more targeted personalised cognitive rehabilitative programme.
GRADIOR has the potential to improve the quality of neuropsychological as-
sessment and assist with personalised cognitive training, including ongoing
evaluation, on particular domains of cognition. Training in dementia rehabili-
tation can be wide ranging and geared to the person’s expressed wishes. It may
focus on broader cognitive stimulation as a means of activity programmes for
people in early stage dementia who are aware of their problems and wish to do
something about them. It may also be useful as a domain-specific targeted cog-
nitive rehabilitation programme by developing restorative strategies for a par-
ticular domain or to improve everyday performance, such as rehearsing where
important items are stored or an important route. GRADIOR has been used for
dementia rehabilitation in urban and rural settings and in specialised assess-
ment centres (Wales, UK) and non-specialised settings such as a health centre
or the person’s home (Spain). The extent of the stimuli available allows for
graded programming that can maintain a person’s motivation, encourage
regular use of the memory training system, and maintain memory efficacy and
competence. Involving family carers in memory stimulation with GRADIOR
in the home can also assist them in combating their widely reported concerns
of apathy in their relative with early dementia. In this chapter we have de-
scribed its use in compensatory strategies. GRADIOR also offers a flexible, in-
teractive and supportive programme between the person with dementia and
the computer and it can, if this is what a patient or family wishes, be used for
domain-specific restoration. A recent meta-analysis of cognitive training in
 GRADIOR: A Personalised Computer-based Cognitive Training Programme 103

Percentage of correct responses over 7 sessions

Verbal instructions Level 2 trials
minimised introduced

100

90

80

70

Correct responses %
60
Level 1 Level 2

50

40

30

20

10

0
S1 S2 S3 S4 S5 S6 S7

Figure 6.1 Effect of GRADIOR on Paula

Errors: A fine grained analysis of the errors by type of exercise revealed that Paula did not
produce errors in the perception exercises. A paired t test revealed a significantly higher
error rate for attention trials (M = 10.85) than for memory trials (M = 4.57), t (5) =
2.88, p<0.02.
Attention performance: most of the errors were present in attention exercises. Persistent
problems were noted for exercises that involved auditory selection of a letter embedded
in a spoken letter sequence, vigilance tasks and stimulus detection. Visual selective at-
tention tasks consistently proved less problematic as they showed the lowest error rate
across all the sessions.
One explanation for why Paula found the auditory task problematic is that these exer-
cises also involve a memory component. For example, a target letter is heard and dis-
played briefly on the screen. The task is then to attend to a list of spoken letters and to
respond when the target letter is heard again. This obviously involves working memory,
and people who have memory deficits as well as attention problems may well find this
task exceptionally difficult.
Memory performance: More problems were apparent for tasks that involved delayed
recognition memory (i.e. the compound delayed recognition task proved more difficult).
This was in contrast to simple delayed tasks, where the target words or pictures appear
on the screen in a grid intermixed with non-target words and the compound task involves
presentation of a sequence of target and non-target words requiring a yes or no re-
sponse to be made to each individual word or picture. For example, at level one two
words were presented and Paula had few problems in recalling immediate and simple
delayed recognition tasks whilst errors were consistently made in the compound delayed
tasks. This pattern was similar when level two tasks that involved recognition of three tar-
get words or pictures were introduced.
Comment: The pattern indicates that although Paula appears to have little difficulty in
perception of stimuli, she had marked difficulties in delayed recall and attention. Al-
though cognitive assessment suggested that she had severe impairments, Paula was
able to comprehend instructions, engage and interact with the programme. Despite a
short intervention period, Paula showed an improvement over time for level one and
level two exercises, suggesting that people presenting with memory problems in a clini-
cal setting can improve in task-specific cognitive processing (Franco et al. 1998). Paula
appeared to enjoy doing the exercises and no particular problems with its implementa-
tion were noted.
104 Early Psychosocial Interventions in Dementia

Alzheimer’s disease suggests that, compared with compensatory strategies,

restorative programmes have a greater effect on overall functioning (Sitzer,
Twamley and Jeste 2006).

Note
1 Available from first author by email at [email protected].

Acknowledgements
Teresa Orihuela and Yolanda Bueno for assistance in developing and evaluat-
ing GRADIOR at INTRAS in Spain.

References
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Lawton, M.P. and Brody, E.M. (1972) ‘Assessment of Older People.’ In D. Kent, R. Kastenbaum and
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Lobo, A., Escolar, V., Esquerra, J. and Seva, A. (1980) ‘Mini-Examen Cognoscitivo: un test sencillo y
práctico para detectar alteraciones intelectivas en pacientes psiquiátricos.’ Revista Psiquiatría y
Psicología Medica 5, 39–57.
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European Psychiatry 11, 60–65.
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Further reading and related references

Alm, N., Astell, A., Ellis, M., Dye, R., Gowans, G. and Campbell, J. (2004) ‘A Cognitive Prosthesis
and Communication Support for People with Dementia.’ In P. Gregor and A. Newell (eds)
Neuropsychological Rehabilitation: Technology in Cognitive Rehabilitation. Hove: Psychology Press.
Clare, L. and Woods, R.T. (2001) Cognitive Rehabilitation in Dementia. Hove: Psychology Press.
Clare, L. and Woods, R.T. (2004) ‘Cognitive training and cognitive rehabilitation for people with
early Alzheimer’s disease. A review.’ Neuropsychological Rehabilitation 14, 385–401.
Clare, L., Woods, B., Moniz-Cook, E., Orrell, M. and Spector, A. (2003) ‘Cognitive rehabilitation
and cognitive training interventions targeting memory functioning in early stage Alzheimer’s
disease and vascular dementia (review)’. In The Cochrane Database of Systematic Reviews, Issue 4.
Chichester: Wiley.
Franco, M.A. and Orihuela, T. (1998) Programa AIRE. Sistema Multimedia de Evaluación y Entrenamiento
Cerebral. Valladolid: Edintras.
Franco, M., Orihuela, T., Bueno, Y. and Cid, T. (2000) Programa Gradior: Programa de Evaluación y
Rehabilitación cognitiva por ordenador. Valladolid: Edintras.
Glisky, E.L. (1995) ‘Computers in Memory Rehabilitation.’ In A.D. Baddeley, B.A. Wilson and
Watts, F.N. (eds) Handbook of Memory Disorders. Chichester: Wiley.
Gregor, P. and Newell, A. (eds) (2004) ‘Technology in cognitive rehabilitation.’ Neuropsychological
Rehabilitation 14, 1–2, 1–256.
Kapur, N., Glisky, E.L. and Wilson, B.A. (2004a) ‘External Memory Aids and Computers in Memory
Rehabilitation.’ In A.D. Baddeley, M. Kopelman and B.A. Wilson (eds) The Essential Memory
Handbook of Memory Disorders for Clinicians. Chichester: Wiley.
Kapur, N., Glisky, E.L. and Wilson, B.A. (2004b) ‘Technological memory aids for people with
memory deficits.’ Neuropsychological Rehabilitation 14, 1–2, 41–60.
Quittre, A., Olivier C. and Salmon, E. (2005) ‘Compensating strategies for impaired episodic
memory and time orientation in a patient with Alzheimer’s disease.’ Acta Neurologica Belgica 105,
30–38.
Smartbrain. www.educamigos.com/educamigos/sta/index.jsp (accessed 7 August 2008).
Chapter 7

Memory Groups
for People with Early
Dementia
Molly Burnham

Overview
Memory problems in dementia can affect an individual’s day-to-day life in
many ways. For example, daily routines and activities such as shopping,
managing money, using public transport, cooking or finding one’s way
around can become difficult for the individual. Meeting new people and
socialising can at times be awkward, particularly if the person with the
memory impairment cannot remember recent conversations or people they
have been introduced to. Such memory ‘failures’ in daily life can have an
impact on self-confidence and well-being. Therefore it is important that
people with memory problems are supported, in order that they can maintain a
satisfying and meaningful lifestyle. Memory group therapy is one way to
support people in early stage dementia with their memory difficulties. This
chapter will describe a memory group therapy course and its effectiveness in
helping people continue to live as near normal lives as possible. It will also
discuss methods of assessment that are necessary in determining an individ-
ual’s suitability for a memory group based course.
Memory impairment is typically the earliest manifestation of most
dementias. The question of learning how to cope with and respond to these
memory difficulties is very likely to arise for the majority of those afflicted.
Carers are also just as likely to express strong emotions about the memory
problems, such as frustration, anger, fear or sadness and may also need advice
on how to cope with memory problems (Clare 1999). It is important that some

106
 Memory Groups for People with Early Dementia 107

form of psychosocial intervention is implemented so as to optimise function-

ing and well-being of the person with dementia, minimise the risk of excess
disability, and to prevent the development of a ‘malignant social psychology’
(Kitwood 1997). Cognitive training and cognitive rehabilitation are the
main interventions used with people who are in the early stages of dementia
(Clare and Woods 2004). Indeed, McEvoy and Patterson (1986) assessed the
effectiveness of a short-term training programme designed to return institu-
tionalised people with Alzheimer’s disease back into the community, and
participants showed improvement in most areas of personal information,
spatial orientation, communication and activities of daily living. However,
more complex activities such as money management or meal selection did not
improve with training. Furthermore, Piccolini et al. (1992) demonstrated im-
provements in cognitive functioning with a month-long cognitive training
programme for older hospital patients who showed cognitive impairment.
However, a more specific memory intervention may take place in a group
therapy environment and is a way of supporting people with memory
difficulties.

The aim of memory group therapy

The most obvious goal of memory group sessions is to help people with
memory problems to overcome their difficulties, by teaching them various
strategies and techniques, so that they are able to continue their daily activities
as before. Other goals of group therapy are to build confidence, improve socia-
lisation, and promote problem solving. The course aims to introduce people
relatively early in their illness to the concept of using memory aids and tech-
niques, so that they can make a habit of using them. Members of the group
learn to apply basic principles and techniques of learning and recall in a variety
of practical situations, such as getting to know new people. The idea is that
once individuals have successfully learnt these principles they will be able to
transfer them to other situations. The benefits of a group therapy setting (as
opposed to individual therapy) are key to providing the support that people
with early dementia need. Such advantages of memory group therapy are as
follows:
1. People realise that they are ‘not alone’ in having memory problems.
2. They are able to accept their personal situation.
3. They encourage each other, offering mutual support, and are able to
share successes and failures without embarrassment.
108 Early Psychosocial Interventions in Dementia

4. Acknowledgement from other members of the group of an individ-

ual’s progress increases self-esteem.
5. The social aspect of the group is important since people with early
dementia often tend to become isolated.
6. The group setting provides time and space in an unthreatening envi-
ronment within which to practise the skills and techniques learned.

Memory group therapy course

The basic principles taught include helping people to learn how to use different
memory aids (e.g. calendars, timers, dictaphones and visual prompts) and to
decide which will be the most useful for them. The importance of routines and
habits is highlighted, and members of the group are encouraged to identify
skills which they particularly wish to retain, for example, dressing themselves
or playing bowls. The members are then encouraged to ‘over-learn’ these
skills.
The core techniques taught and transferred to different areas include repeti-
tion, frequent recall, association with something/someone already known, the
use of rhymes, alliteration and mnemonics, the use of suitable memory aids,
and making use of habits, including the ‘over-rehearsal’ of important skills. As
many senses as possible are involved in the learning process and individuals
identify which senses are most useful to them in both the registration and the
recall process.
The course is designed as a series of separate topics which are covered in
the order most appropriate for the individuals involved (see Box 7.1 for course
topics). The handouts are designed specifically for people with memory
problems using simple language and pictorial prompts, and participants are
encouraged to go over the session handouts with a relative or friend (see Box
7.2 for an example of a handout).

Guidance for introducing a memory group

Although the sessions described here have been developed from an occupa-
tional therapy perspective, successful groups can also be run by mental health
nurses, psychologists and speech therapists. Between six to ten clients are
pre-selected to go to the memory group, and they are encouraged to attend
every session. There may be between 6 to 12 sessions, depending on the needs
of the group. Ideally, there should be two facilitators to lead interactive groups,
to assess the needs of individual members and to monitor their progress.
Before and after the group each member should be visited at home to assist in
implementing the techniques learnt, helping to improve the person’s quality of
 Memory Groups for People with Early Dementia 109

Box 7.1 Topics covered on

memory group therapy course

CORE SESSIONS
Getting to know
you • Because group members are often people who do not know each other,
this activity is normally used at the beginning of the course.
• The session looks at the different ways that can be used to learn and
recall people’s names, and includes a practical name-learning exercise in
the group.
• Photos may also be taken in order that people can have pictures to help
them remember the names of other group members.
How we remember
• Registration, retention and recall are discussed, as well as memory linked
to each of the senses.
• Group members are encouraged to identify what senses are personally
most useful to them.
• Different kinds of memory such as semantic, personal and procedural are
also introduced, but not named as such.
Hurrah for habits
• This unit covers skills and habits, together with the use of memory aids.
• Each person identifies aids that might help them and the group discusses
how they can make a habit of using them.
The all-important
question • This topic introduces the use of questions as an aid to concentration at the
registration stage, and also as a tool for recall.
• A framework of questions to help concentration when listening, reading or
planning what to say is introduced, for example, questions starting with
who, what, why or when, and suggestions for using it.
Mood and
memory • Often used towards the end of the unit when group members have
become very comfortable with each other, this unit discusses the
emotional responses to memory impairment and the effect of emotions on
registration and recall.
SUPPLEMENTARY UNITS (incorporated according to the different needs of each group)

• Finding your way.

• Telephone talk.
• Money matters.
• Remembering what you read.
• Confidence in the kitchen.
• Sensible shopping.
• Using public transport.

life. Members tend to perform better with carer support, so it is useful if their
carers attend carer support groups, since they enable them to become familiar
with the material and ways of reinforcing the techniques taught between
sessions. However, it must be noted that the presence of carers in the memory
group therapy sessions may inhibit group members. Members may also benefit
110 Early Psychosocial Interventions in Dementia

from a monthly follow-up ‘memory club’ which people who have completed a
course may join. These sessions reiterate topics covered on the course and
allow members to benefit from individual help both during the sessions and
afterwards.

Box 7.2 An example of a course handout

GETTING TO KNOW YOU

When someone is introduced, always:
· listen carefully to their names
· repeat the name as you greet them
· think about the name

° Do you like it?

° Do you know someone else with the same name?
° Is there something unusual about it?
° Does it make you think of something else?
° Try to find a prompt or clue that will help you
remember – a rhyme or a picture?
· use their name in conversation
· use it again when you say goodbye
· write the name down –
while they are there if you ‘Jack in a Box’
really must remember it –
or as soon as they leave
· try to picture their name
and face within a few
minutes
· do this at intervals until it comes naturally
· just before you go to sleep, try to picture
them and say the name again.
 Memory Groups for People with Early Dementia 111

Selecting who can benefit from memory groups

It is important that all group members have a similar level of cognitive ability
and they recognise that they have a memory problem. They should also have
adequate hearing and speech to allow them to participate in the group
sessions, and they need to be committed to the group and each other so that
they can benefit from the therapy. People are more likely to benefit if they are
insightful, motivated, able to communicate within a group setting and are at an
early stage in their dementia. Due to the specific inclusion criteria, there has to
be careful assessment before the group. There are a number of assessments
which can be carried out in order to determine how appropriate it is for an in-
dividual to join a memory group.
First, potential members of the memory group should be interviewed to
ensure that they recognise they have a memory problem, have no perception
difficulties and are keen to participate in such therapy. It is also useful to assess
the extent to which the person’s carer is supportive of the programme. Second,
all potential members should be assessed using, for example, the Mini Mental
State Examination (MMSE, Folstein, Folstein and McHugh 1975). Providing
the other conditions are met, those who score 22/30 or above will be able to
benefit from the memory therapy. Occupational therapists have also found the
Large Allen Cognitive Level Screen (LACLS, Allen 1996) and the Assessment
of Motor and Process Skills (AMPS) to be more appropriate and sensitive
measures. Since formal assessment can be stressful for people, it is recom-
mended that only one of these assessments is used in the screening interview,
as well as any other assessment normally used in the care setting. Third, the ef-
fectiveness of the intervention may be evaluated using Quality of Life (QOL)
assessments and carer questionnaires in order to detect any change. Ideally, as-
sessment should occur before the group starts, soon after completion, three
months later and then at six month intervals.
Memory groups for people with early dementia have so far been found to
be very effective. The following describes the case of Bernard who was diag-
nosed with Alzheimer’s disease and attended memory group therapy sessions.

Case example – Bernard

Bernard was only 52 when he was diagnosed with Alzheimer’s disease.
He had gone to his GP because he was no longer coping with a
responsible position in an electronics firm. Once he had received his
diagnosis, his employer encouraged him to return to work, but in a less
demanding position. Bernard was keen to maintain this for as long as
possible. He joined a memory group which took place in the evening
once a week for seven weeks.
112 Early Psychosocial Interventions in Dementia

Bernard was tested before and after the group using the Assessment
of Motor and Process Skills (AMPS) and the Rivermead Behavioural
Memory Test (RBMT, Wilson, Cockburn and Baddeley 1985). Bernard’s
scores before the group were 2.70 for Motor (physical) Skills (+2 =
cut-off point; person can live unaided in the community) and 1.16 for
Process (cognitive) Skills (+1 = cut-off point).
After completing the group sessions, these scores had risen to 2.77
and 1.58. The small increase in Motor Skills is probably not significant,
but the increase of 0.42 in his Process Skills is a marked improvement.
There was an increase of 12 to 15 per cent for Adaptation, Space and
Objects, and Using Knowledge (all Process categories). A 10 per cent
increase in Strength and Effort outweighed the 9 per cent decrease in his
score for Co-ordination (Motor categories).
On the Screening score for the RBMT, Bernard showed an increase
of 16.6 per cent, although there was only a small, non-significant,
improvement on the Standardised Profile score.
As a result of the group sessions Bernard started using a number of
new memory aids and strategies (making lists, using a calendar or diary,
reminder notes, shopping list, notebook and prioritising tasks). No
doubt these helped him to maintain the performance as shown by
retesting a year after the group. When he had new difficulties he
discussed these with his wife, and he was able to find a ‘trick’ to help. He
was continuing to meet up with his friends, one of whom would prompt
him when it was his turn to buy a round of drinks for his friends at the
local pub.

More informal sessions of other groups indicate that when the training takes
place early in the course of the illness, and where the core principles have con-
tinued to be reinforced, some people have continued to improve even after the
formal sessions have ended. Moreover, it appears that those who develop per-
sonalised coping strategies during the programme are more likely to maintain
their memory skills. For example, one member who was a window cleaner
thought he would have to stop work because he went to the same house twice
in one week and neglected others. However, he started using a dictaphone to
record which windows he cleaned each day and whether he had been paid.
This worked very well and he was able to continue in employment. Even when
decline continues, once the principles have been learnt they appear to enable
more effective functioning for longer. It is therefore evident that memory
group therapy does indeed offer a way of support for people with early
dementia and allows them to live a more meaningful and satisfying way of life.
More research is needed into the long-term effects of memory training and the
evaluation of longer lasting courses, but the lack of adverse effects of such
group therapy suggests that it has the potential to empower the person to
 Memory Groups for People with Early Dementia 113

increase their cognitive strengths and to continue finding methods of attaining

personally meaningful and important goals (Clare and Woods 2004).

Acknowledgements
The memory therapy course described in this chapter was first piloted in an
NHS setting in Buckinghamshire, UK with people below the age of 65 who
had been diagnosed with dementia (i.e. ‘Young-onset Dementia’) between
1995 and 1997. The author would like to acknowledge Denise Cottrell
(clinical psychologist) for support with this programme. The work was then re-
developed in an NHS setting in Sussex working with older people within an
early identification and psychosocial intervention service. The author would
like to acknowledge Dr Caroline Williams (clinical psychologist), for support-
ing this intervention in Sussex.

References
Allen, C.K. (1996) Allen Cognitive Level Test Manual (with kit included). Colchester, CT: S&S
Worldwide. Available at www.ssww.com, accessed 7 August 2008.
Clare, L. (1999) ‘Memory rehabilitation in early dementia.’ Journal of Dementia Care 6, 33–38.
Clare, L. and Woods, R.T. (2004) ‘Cognitive training and cognitive rehabilitation for people with
early-stage Alzheimer’s disease: a review.’ Neuropsychological Rehabilitation 14, 385–401.
Folstein, M., Folstein, S. and McHugh, P.R. (1975) ‘Mini-Mental State Exam (MMSE): a practical
method for grading the cognitive state of patients for the clinician.’ Journal of Psychiatric Research
12, 189–198.
Kitwood, T. (1997) Dementia Reconsidered: The Person Comes First. Maidenhead: Open University Press.
McEvoy, C.L. and Patterson, R.L. (1986) ‘Behavioural treatment of deficit skills in dementia
patients.’ Gerontologist 26, 475–478.
Piccolini, C., Amadio, L., Spazzafumo, L., Moroni, S. and Freddi, A. (1992) ‘The effects of a
rehabilitation program with mnemotechniques on the institutionalised elderly subject.’ Archives
of Gerontology and Geriatrics 15, 141–149.
Wilson, B.A., Cockburn, J. and Baddeley, A.D. (1985) The Rivermead Behavioural Memory Test. Bury St
Edmunds: Thames Valley Test Company. Available at www.pearson-uk.com, accessed 7 August
2008.

Further reading and related references

Assessment of Motor and Process Skills (AMPS). For further information on this standardised
assessment see www.ampsintl.com (accessed 7 August 2008).
Burnham, M. (1999) ‘Effective group memory therapy for people with dementia.’ Signpost 3, 4,
12–14.
Gordon, B. (1995) Memory: Remembering and Forgetting in Everyday Life. New York, NY: MasterMedia
Ltd.
Nichols, R. and Cole, A. (1999) ‘Nurse led – an accessible memory service.’ Signpost 4, 3, 37–39.
Rupp, R. (1998) Committed to Memory: How We Remember and Why We Forget. London: Aurum Press.
Wilson, B.A. and Moffat, N. (1992) ‘The Development of Group Memory Therapy.’ In B.A. Wilson
and N. Moffat (eds) Clinical Management of Memory Problems, 2nd edn. San Diego, CA: Singular
Publishing Group.
Winter, A. and Winter, R. (1997) Brain Workout: Easy Ways to Power Up Your Memory, Sensory Perception,
and Intelligence. New York, NY: St. Martin’s Griffin.
114 Early Psychosocial Interventions in Dementia

Available resource
The booklets referred to and a facilitator’s handbook are available to print out
from a CD: Memory Management Groups for People with Early Stage Dementia ©
Molly L. Burnham. This may be obtained from the author. For further infor-
mation about running memory training groups and to obtain copies of the
course material, please email: [email protected] or
[email protected]
Chapter 8

Health Technologies
for People with Early
Dementia
The ENABLE Project
Suzanne Cahill, Emer Begley and Inger Hagen

Overview
ENABLE was a European longitudinal study carried out in five countries,
namely Norway, Ireland, the UK, Finland and Lithuania. The study started in
March 2000 and was funded by the European Commission under the
programme for Quality of Life and Management of Living Resources (File No
QLK6–CT-2000–00653). The overall aim of ENABLE was to investigate
whether it was possible to facilitate more independent living for people with
mild to moderate dementia and promote their quality of life, by installing
at-home assistive technologies. This would be done by evaluating both the in-
dividual and his or her family carer’s experiences of using these products over a
12-month period. The specific aims of ENABLE were as follows:
• to examine whether assistive technologies can enable people with
dementia by supporting their well-being, giving positive experi-
ences, reducing worries and unrest, and reducing the burden of
carers
• to develop a methodology to assess the effects of providing
assistive technologies to people with dementia living at home

115
116 Early Psychosocial Interventions in Dementia

• to develop approaches to assessing the socio-economic costs and

benefits of developing, implementing and using assistive technolo-
gies
• to investigate cross-country differences and similarities in the feasi-
bility of devices and in applying methodologies to their
assessment.
This chapter presents findings from the Irish assessment study for ENABLE,
six months after product installation first took place. In particular, the chapter
reports on outcome variables (dependent) including use and usefulness of
these products both from a family carer’s perspective and from that of the
person diagnosed with dementia. Some case studies are also drawn on to
capture, in more depth, the complexities of the lives of people diagnosed with
dementia in order to better understand their particular problems coping with
dementia and adapting to these new psychosocial interventions.

Background
Dementia carries a heavy economic burden, not only for all those diagnosed
with the illness but for their primary carers, the community and society at
large. The disability weight for dementia is higher than for almost any other
health condition, with the exception of terminal cancer and spinal injury (Ferri
et al. 2005) and the worldwide costs of dementia are significant (Wimo,
Jonsson and Winblad 2006). In advanced economies, many of these financial
costs are borne by family members, since most people with dementia continue
to live at home attempting to manage daily tasks themselves. Accordingly,
whilst most people diagnosed wish to live at home, many family carers
emphasise the complexities of the home environment, particularly the dis-
abling impact of contemporary technology (Sweep 1998). As the illness pro-
gresses many people with dementia experience failures because their ability to
maintain relationships or handle activities of daily living progressively deteri-
orates. Combined, this can lead to poorer physical functioning, depression and
a reduced quality of life. Thus, many of the challenges faced by people with
dementia and their family carers are of a very practical nature (Bjørneby, Topo
and Holthe 1999; Marshall 2000). This has led to a burgeoning interest in the
use of in-home technology to support the care and well-being of people with
dementia (see, for example, Holthe, Hagen and Bjørneby 1999; Woolham
2006; Woolham et al. 2002; Teknik och demens [technology and dementia]
projects funded by the Swedish Institute of Assistive Technology and the
Nordic Development Centre for Rehabilitation Technology, www.hi.se and
www.nuh.fi, both accessed 7 August 2008).
 Health Technologies for People with Early Dementia: The ENABLE Project 117

The Irish context

According to one Irish expert, the application of Eurodem prevalence rates to
the most recent census of population data for Ireland, suggests that there are
currently some 34,097 people with dementia living in Ireland of whom
20,222 are women and 13,875 men (O’Shea 2006). While most of these
people live at home (O’Shea and O’Reilly 1999a, 1999b), there is no commu-
nity care legislation in Ireland, placing an onus on the Health Service Execu-
tive to provide services to older people with a dementia that are free of charge
and as a right (since January 2005, health and personal social services in
Ireland are delivered by the Health Service Executive through a network of
local health officers, health centres and clinics). Accordingly, apart from a small
numbers of universal services (such as free travel and free access to primary
care), most core social services in Ireland are delivered in a discretionary ad hoc
manner and on a selective rather than universal basis (Gallagher 2006). In this
regard and in the context of the current model in Ireland of a mixed economy
of welfare, psychosocial interventions by way of assistive technological
services for older people including those with dementia, have not been legis-
lated for. Curiously this sets Ireland apart from other European countries such
as the UK, Finland and Norway, where legislation for older people’s services,
including the supply and maintenance of technologies, has been in place for
some time. ENABLE was therefore pivotal in Ireland in attempting to raise
professional and public awareness about the potential that assistive technolo-
gies can have to help people with dementia to live at home more independ-
ently. The project was to provide a unique opportunity to test out several
assistive technologies in people’s homes, to seek their views on how these
worked, and to assess the extent to which these technologies could adequately
address their practical problems.

Background and aims of the study

ENABLE was a hypothetic-deductive study. The hypothesis was that use and
usefulness of products would be dependent upon factors related to the person
with dementia, their carer, the environment, the product and the research
(Hagen et al. 2004). The research design was also exploratory/descriptive
because this was the first time, in the European context, that these particular
research questions were investigated (for an extensive review of the methodol-
ogy see Hagen et al. 2004). Both quantitative and qualitative data were
collected from people with dementia and their primary carers, who were pre-
dominantly family members. Their views and experiences about the respective
devices installed in their homes were sought over a follow-up period.
Although use and usefulness of the products were considered important
118 Early Psychosocial Interventions in Dementia

primary outcome measures, the latter was also seen to be dependent on: (a) the
nature of problems experienced; (b) the appropriateness of the device intro-
duced to address these problems (such as falls at night, time disorientation); (c)
the importance of the problem to the individual diagnosed with dementia and
to his or her family carer.

Study inclusion and exclusion criteria

As part of the developing methodology, strict inclusion criteria were devel-
oped. Respondents were required to:
• have a diagnosis of Alzheimer’s disease, vascular dementia or
mixed Alzheimer’s disease and vascular dementia
• have a Mini Mental State Exam (MMSE) score of 12 or above
• have a primary carer (either co-resident or living nearby)
• be aged over 50 years
• be in reasonably good nutritional and general health
• be deemed by staff to be able to benefit from one or other of these
products
• provide consent to participate in the study
• live in close proximity to Dublin.
Exclusion criteria outruled those people with dementia who:
• had a major psychiatric disorder
• were involved in other drug/clinical trials
• were likely to move to long-term care within the first three
months of the study.
Other ‘real life’ challenges in relation to the recruitment and implementation
phase of this study included: the novel nature of the project; the deteriorating
aspect of Alzheimer’s disease and other related dementias; the natural protec-
tiveness that many carers have for their relatives; the consent protocol which
permitted people to withdraw from the study at any stage; and the desire on
the researcher’s part to carefully match the most appropriate device to the
relevant participant.
 Health Technologies for People with Early Dementia: The ENABLE Project 119

Description of assistive technologies evaluated in Ireland

Table 8.I describes the assistive technologies evaluated in ENABLE and
provides a breakdown of product distribution per person, at baseline (when
devices were first installed) and at Time Four (i.e. six months after the study
began). Although some people had multiple psychosocial needs, for product
evaluation and so as not to confound the assessment, it was felt advisable that
only one device should be supplied to each participant. The need that was
most important to the person with dementia was chosen as the criterion for
choosing this device. At three months, a total of 20 people had completed the
study and by six months numbers had dropped to 17, representing an attrition
rate of 53 per cent (n = 15) during the first six-month follow-up period. In
most cases withdrawals occurred due to technical problems with the devices,
due to admission to long-term care facilities, or because of difficulties adjust-
ing to the new products. Figure 8.1 shows a pictorial description of the four
assistive technologies evaluated in Ireland and described in this chapter.

Table 8.1 Description of assistive devices being tested in Ireland

Item Usage Expected effect Product distribution Product distribution
at baseline (N =32) completers to six
months (N = 17)
Automatic night and As a calendar; day, Facilitates 6 5
day calendar date and time of orientation, prevents
day (morning, people from going
afternoon or night) out during the
are automatically night.
displayed.
Item locator for lost Pressing the picture Finds frequently 11 4
objects of an item on a wall mislaid objects such
display panel as keys, purse, etc.
causes the lost item Reduces worries
to emit a warbling and time spent
sound, stops when looking for mislaid
item is picked up. objects.
Automatic night Automatic light Prevents falls at 6 3
lamp turns on and off night, reduces
when the person anxiety.
gets in and out of
bed.
Picture telephone A telephone that Reduces anxiety 6 5
displays pictures of surrounding the use
nine contacts whose of telephones,
numbers are stored supports memory.
in the phone; it also
has larger buttons.
120 Early Psychosocial Interventions in Dementia

Figure 8.1: Pictorial examples of the assistive technologies evaluated in Ireland

Recruitment
People were recruited for this study from: (a) the Mercer’s Institute for
Research on Ageing and its National Memory Clinic; (b) Medicine for the
Elderly at St James’ Hospital; (c) the Old Age Psychiatry services of both St
James’ and St Patrick’s hospital; (d) the Alzheimer Society of Ireland (ASI). Ac-
cordingly, amongst the initial 32 people recruited to the study, ten families
were referred by staff from the National Memory Clinic, seven came from St
Patrick’s hospital, eight from the ASI, five from the Department of Medicine
for the Elderly and two referrals were made by hospital-based occupational
therapists. An incentive for study participation was the fact that devices would
be retained free by families after study completion. However, despite this in-
centive and the rigorous and concerted effort used to recruit participants (in-
cluding distributing information kits about products and their expected
outcomes to families), a number of respondents had preconceptions about the
products, causing disappointment in some cases, as products were not always
what they had expected.

Respondent demographics
Table 8.2 shows the socio-demographic and cognitive characteristics for the
sample of people with dementia (n = 17) who remained in the study over the
first six months. Amongst the sample, 14 respondents were diagnosed with
Alzheimer’s disease, one had vascular dementia, and two had mixed Alzhei-
mer’s disease and vascular dementia (not shown). Most (n = 13) had a mild
dementia with a median MMSE score of 22. As might be expected, there were
more than twice as many women than men (12:5) in the sample. Interestingly,
several of these men and women (n = 7) were continuing to live at home alone.
 Health Technologies for People with Early Dementia: The ENABLE Project 121

Table 8.2 Socio-demographic and cognitive

characteristics of people with dementia (N = 17)
Age, years Gender Living arrangements MMSE Degree of
dementia
Mean Range Male Female Alone With With Median Range Mild Moderate
spouse carer’s
family
76 61–91 5 12 7 8 2 22 17 13 4

The primary carers (n = 17) had an average age of 61 years (range 36 to 81

years), five were males and 29 percent were in paid employment. Only a
minority (n = 5) were in paid employment whilst continuing to provide care to
their relatives. The majority received very limited formal support from govern-
ment services and limited assistance from other family members (not shown).

Outcomes
As mentioned, two dependent variables, namely (a) use of products and (b)
their perceived usefulness, were used to evaluate the four assistive technologies
trialled in the homes of these 17 men and women with dementia who were still
participating in the study at the end of six months. Questions investigating
these issues were asked of both the individual and his or her primary carer at
three points in time, namely three weeks, three months and six months after
product installation. To check for reliability of data, the primary carer’s own
perception of their relative’s use of the product was also investigated. Only
data pertaining to Time Four are reported in this chapter. For data collected at
three months see Cahill et al. (2007).

Person with dementia’s use of product

Table 8.3 demonstrates the use of the four assistive technologies reported by
people with dementia six months after their installation.

Table 8.3 Use of products reported by person with

dementia six months after devices were installed (N = 17)
Person with dementia: Have Type of device implemented Total
you used the product?
Count Calendar Lamp Locator Telephone
Yes 4 2 1 4 11
No 0 1 3 1 5
No answer 1 0 0 0 1
Total 5 3 4 5 17
122 Early Psychosocial Interventions in Dementia

Table 8.3 shows that according to the individual with dementia, the most fre-
quently used ENABLE devices were the night and day calendar and the picture
telephone, where four out of five people with dementia reported they contin-
ued to use both of these devices six months after installation. As regards the
night lamp, the data show that two out of three people assessed for this device
reported they were still using it at this point in time. Less popular was the item
locator where only one out of four people with dementia reported they were
continuing to use the device six months after its installation. In total 11 out of
17 people with dementia (65%) claimed they were still using the device six
months after its installation. The positive impacts many of these assistive tech-
nologies had on the lives of these people are well illustrated in the qualitative
data:
[I am] very satisfied, I’m very pleased with it, my little toy, it’s the one thing I
can use. I’m slow at all sorts of other things. (Man with dementia, picture
button telephone, 61 years)
It’s very handy, it’s marvellous, it saves you looking for numbers. (Woman
with dementia, picture button telephone)

Table 8.4 Carers’ perceptions of use of products by their

care recipient six months after installation (N = 17)
Carer: Has person with Type of device implemented Total
dementia used the product?
Count Calendar Lamp Locator Telephone
Yes 4 3 0 5 12
No 0 0 3 0 3
No answer 1 0 1 0 2
Total 5 3 4 5 17

Table 8.4 shows data emerging from interviews conducted with primary
carers about their perceptions of their relatives’ use of each product six months
after its installation. By and large, carers’ accounts of product use tended to be
consistent with the individuals’ own perceptions. Data show, for example, that
in the opinion of primary carers, the calendar, night lamp and picture tele-
phone tended to also be used by their relative. In contrast no primary carer
reported that the item locator was now being used by their relative.
 Health Technologies for People with Early Dementia: The ENABLE Project 123

Carers’ use of product

Table 8.5 reports carers’ accounts of their own use of the respective products
six months after their installation. Given that the products were originally
designed for use by the person with dementia and not by a primary carer, the
data show that in the case of both the calendar and the picture telephone these
technologies were also preferred by the primary carers. For example, after six
months, three out of four carers stated that they also used the night and day
calendar, and four out of five claimed they used the picture telephone. Interest-
ingly, the data demonstrate that more family carers than persons with dementia
were using the item locator at this point in time.

Table 8.5 Carers’ own use of assistive devices

six months after installation (N = 17)
Carer: Have you used the Type of device implemented Total
product?
Count Calendar Lamp Locator Telephone
Yes 3 1 2 4 10
No 1 2 1 1 5
No answer 1 0 1 0 2
Total 5 3 4 5 17

Again the qualitative data provide rich evidence of the potential such
psychosocial interventions have to reduce carer burden and improve the
person with dementia’s self-esteem and well-being:
I find it wonderful as sometimes my patience wears thin and I get quite
stressed before we leave the house. My mother’s mood was also better as she
did not have to try and remember where everything was and so did not
realise how forgetful she was. (Daughter carer’s views about item locator)

Person with dementia’s perceptions of

device usefulness
Table 8.6 reports on the usefulness of the respective devices from the perspec-
tive of the sample of people with dementia. Data show how 12 out of 17
people with dementia (70%) reported the installed technologies were still in
their view useful for them six months after their installation. There were only
three cases where respondents had difficulty understanding the question and
were unable to answer it. One person supplied with an item locator reported
that it was not useful and in another case a woman who had a picture telephone
installed also denied that it was useful.
124 Early Psychosocial Interventions in Dementia

Table 8.6 People with dementia – usefulness of assistive

devices six months after installation (N = 17)
Person with dementia: Is the Type of device implemented Total
product useful?
Count Calendar Lamp Locator Telephone
Yes 4 2 2 4 12
No 0 1 0 1 2
No answer 1 0 2 0 3
Total 5 3 4 5 17

Carers’ perceptions of usefulness of device

When carers’ own views were sought about the respective usefulness of these
devices, data show that 13 out of 17 (76%) reported that they thought the
device with which they were supplied was useful (see Table 8.7).
Table 8.7 shows that in relation to the night lamp and telephone each of
the primary carers when interviewed reported that these devices were useful.
Some technical problems with the item locator resulted in two carers stating
they were unable to report on its usefulness and one other carer claimed it was
not useful.

Table 8.7 Carers’ perceptions of usefulness of assistive devices for

person with dementia six months after installation (N = 17)
Carer: Is the device useful for Type of device implemented Total
person with dementia?
Count Calendar Lamp Locator Telephone
Yes 4 3 1 5 13
No 0 0 1 0 1
No answer 1 0 2 0 3
Total 5 3 4 5 17

Case studies
Whilst quantitative and qualitative data provide preliminary evidence of the
benefits that most of these newly installed assistive technologies had on the
lives of people in this study, the data fail to capture the realities and complexi-
ties of these families’ everyday lives, their fears, frustrations and anxieties expe-
rienced whilst coping with a dementia and coming to terms with such
psychosocial interventions. Therefore, to gain more valid portrayals (Patton
1990) and to understand in more detail the unique problems the sample was
 Health Technologies for People with Early Dementia: The ENABLE Project 125

experiencing, the section below details three case studies from the research.
The case studies yield subjective insights into the psychosocial worlds of these
men and women and illustrate the potential that assistive technologies have to
address some of the practical problems that persons with dementia may experi-
ence and the reasons why in some cases technologies failed to work.

Case example – Ernest

Ernest was a 69-year-old Dubliner, diagnosed with mixed Alzheimer’s
disease and vascular dementia. Aware of his diagnosis, he was
enthused about ENABLE from its commencement, was willing to talk
openly about his illness and excited that he was going to receive a new
‘helping aid’. His wife, Vera, reported that one of his main problems was
that he was disorientated in time and would often get up during the
night, making his way to the kitchen to have breakfast. Rather than argue
with him, she tended to allow him do this and usually later persuaded
him to return to bed. She was keen to get support and stated that her
husband’s night wakefulness was disruptive to her own sleep. The
automatic night and day calendar was seen to have the most potential
for Ernest and his wife. Despite his enthusiasm for ENABLE, initially the
unfamiliarity of the design of the night and day calendar, combined with
his failing eyesight, made adapting to this new intervention more difficult
for him than had been previously planned. It took him longer to read the
text on the calendar and yet he refused Vera’s assistance, determined to
read the text himself.
After six months, Vera reported that the night and day calendar had
been very effective. She recalled that one particular night her husband
woke and rather than ask her what time it was, he went to the calendar
independently, clarified from the calendar, which was illuminated, that it
was still night and returned to bed. Another morning she said he rose
shortly after five, and despite her protests, he went down for breakfast as
the ‘calendar had said it was morning’ (the calendar switches
automatically to display morning at 5 am). Another unexpected benefit
of the night and day calendar for Ernest was the fact that he attended a
day centre where each day, staff tended to talk clients through the days
of the week, by way of helping to orientate them. Ernest felt very pleased
that, as a result of the night and day calendar, he now always knew in
advance which day of the week it was, and indeed told his friends at the
day centre about the product. When interviewed, Ernest reported that he
used the calendar and found it very useful. He said the device gave him
greater independence and lessened his dependence on his wife. The
technology was also helpful to Vera as her husband no longer
repeatedly asked questions about the days of the week or the time of
day. In the past, she had found this particularly stressful. Overall, Vera
126 Early Psychosocial Interventions in Dementia

reported that her husband had become more independent and was
coping much better because of the device – ‘because it helps him,
otherwise the days would pass and he wouldn’t know, he looks at this
(the calendar) and he knows where he is’.

Case example – Sarah

When Sarah first became involved with ENABLE, she was 69 years old
and lived with her bachelor son in Dublin. Her daughter, the primary
carer who was the main informant for the project, lived close by. Sarah
was referred to ENABLE because she often mislaid items around the
house and at times blamed others in the house, particularly her son who
lived with her, for losing her things. Her son mentioned that when his
mother behaved in this accusatory manner he reacted negatively and as
a result their relationship had deteriorated over recent times. In turn
Sarah reported that she often felt frustrated with her son when he did
things without telling her. In view of her short-term memory loss and
capacity for mislaying things around the house, it was decided that the
item locator might be a potentially useful assistive technology to help
address Sarah’s difficulty.
Initially Sarah thought that the item locator would be an ideal device
for her, and her children also supported its implementation, recognising
its potential. However, from the implementation phase, there were
problems. First, the installation of the device was delayed due to
technical problems and all item locators had to be recalled. This meant
that the family were waiting longer for the device than was previously
expected. Despite these delays, Sarah and her family remained positive
and motivated. However, once the replacement device was successfully
implemented, technical problems persisted. As an example, Sarah had
difficulty hearing the tags: ‘The locator did not work as we could not
hear it’ (respondent diary entry, carer/daughter). In addition, there were
times when the device failed to ring, which resulted in it not being used at
all. Eventually, the carer reported that the item locator was causing her
mother more confusion than help and the family reluctantly withdrew
from the study. This case study points to the importance of designing and
implementing devices that have undergone extensive and rigorous
pre-testing to avoid expectations people might have from being
unfulfilled. The case study also highlights the importance of thorough
and ongoing needs assessment in all cases where someone with a
dementia is being assessed for an assistive device.

Case example – Gordon

Gordon, aged 59 years, was the youngest participant in ENABLE. He
lived with his wife, Kate, and three children (whose ages ranged from
2 to 16 years) in a quiet housing estate outside Dublin. The family had
 Health Technologies for People with Early Dementia: The ENABLE Project 127

recently moved home from a two-storey house to a bungalow to

facilitate Gordon’s mobility problems. Since being diagnosed with
Alzheimer’s disease, Gordon had resigned from his job and was now
spending most of his time at home alone, as his wife worked part-time
and his children were either at school or attending a childminder. Kate
mentioned that the house move and loss of a second income had
caused her worry and some financial strain. Other practical problems
encountered daily by Gordon included short-term memory loss,
instability of gait and social isolation. New learning was also a
challenge for him, as he tended to be frightened of trying new things out
in case he failed. He was also frustrated that he was no longer able to do
many of the routine tasks he previously found easy. Gordon was a very
sociable person who, throughout his life, always had a large social
network, but now due to his diagnosis and having to take early
retirement he felt socially isolated. For this reason, the picture button
telephone was thought to be an appropriate intervention as it was hoped
this would help keep him in touch with relatives and friends. He had
previously tried other communication devices such as mobile phones
but found they were unsuitable for his needs. It was hoped that the
introduction of the picture button telephone would boost his self-esteem
and improve his ability to communicate with others.
Gordon went through some obvious changes during the ENABLE
trial. At assessment he seemed very low: ‘I don’t enjoy anything
anymore…I worry all the time…nothing makes me happy anymore.’
However, as the project progressed, his mood clearly changed: ‘I wasn’t
content at the start of this, I used to go to the park and cry but that didn’t
solve anything, it just made it worse, now I’m coming around’ (Time
Three). Of all ENABLE participants, Gordon was most open about
discussing his illness and experiences and was also actively involved in
his health care decisions. As the ENABLE trial progressed, Gordon
began showing signs of accepting and dealing better with his diagnosis,
using the picture telephone, and implementing coping mechanisms,
including attending a day centre and going back to his local pub for a
pint. However, despite these positive adjustments, Kate began to find the
caregiver role (including child care) combined with working part-time
and running the household increasingly more challenging and eventu-
ally she chose to take a career break. The case study demonstrates
the differing needs and aspirations of a person and their carer; that is,
on the one hand data show that over the period during which the
picture telephone had been installed Gordon gained independence
and learned to do more things for himself. However, despite these small
victories, during the same time period, Kate began to feel the pressure of
caring more acutely. Both spoke very positively about the picture
telephone, how useful it was and how much they enjoyed using it.
128 Early Psychosocial Interventions in Dementia

Discussion and conclusion

The Irish experience with ENABLE has shown that including people with a
mild to moderate dementia and their primary carers in longitudinal research
was feasible. Most participants, despite their cognitive deficits, were competent
at understanding and answering all questions asked of them and in certain
cases several could provide rich descriptive information about the impact these
psychosocial interventions had on their lives. In the majority of cases, there
was also a degree of consistency between what the primary carer reported
about the use of the product and the individual’s own experience. The Irish ex-
perience suggests that including people with dementia in a study of this kind is
empowering. The approach taken helped to motivate people to use the devices,
as participants were involved from the very inception of the project in matters
that directly affected them and their daily routines.
Our findings show that the majority of participants (65%) equipped with
ENABLE products were still using the devices six months after their installa-
tion and most people found them useful. Likewise, a large majority of family
carers (70%) reported their relative used the device and most of these family
carers themselves also found the products useful six months after installation.
Overall, our results support the hypothesis that the use and usefulness of
assistive technology can be explained by factors relating to the person with
dementia, the carer, the environment, the researcher and the product itself.
Findings showed that the ability to use products was influenced by whether a
cognitively impaired person could remember how to operate the device,
whether that person was familiar with its design and whether the device was
reliable and worked efficiently.
Several technical problems with the ENABLE products were witnessed
within the first few months of the project being launched. However, most of
these problems were easily resolved. Other technical problems persisted (for
example, in the case of the item locator and the night lamp), which meant that
products were not always reliable for the individual or the family carer. Hence
findings about their use and usefulness may have been influenced by ineffi-
ciencies in their performance. In interpreting the results from this study these
issues need to be seriously considered since inevitably they may well have
affected attrition rates, individual attitudes to and assessment of products.
Overall our recommendations on the basis of the ENABLE assessment
study in Ireland are as follows:
• Ensure that prototype products are more fully refined and
pre-tested with a sample of cognitively intact older people, before
in-home implementation studies are developed with persons with
dementia.
 Health Technologies for People with Early Dementia: The ENABLE Project 129

• Each ENABLE product has potential application for people who

do not have dementia. Research on the acceptability of assistive
technology to older people in general reflects a complex model
that gives rise to tensions in acceptability (McCreadie and Tinker
2005). The future commercial availability of these devices will
need to take these findings into consideration. However, given
this, wider availability to cognitively intact older people might
also enhance their acceptability and utility as memory aids for
older people who then go on to develop a dementia.
• The ENABLE project has highlighted the need to develop relevant
social policy responses to the issue of assistive technology for
people with dementia in Ireland.
Finally, our experience in ENABLE raises several critical questions about the
role of service providers in relation to the assessment of people with dementia
for assistive technology; the in-home installation of these technologies; their
cost; and their maintenance and monitoring (see Cahill et al. 2007). Issues to
be resolved include:
• Which professional group should assess people with dementia for
assistive technologies, and in the context of scarce resources, on
what basis should client need be determined?
• From where should technologies be supplied (i.e. hospital depart-
ments, day care centres, disability resource centres or community
services)?
• Should occupational therapists, community social workers, public
health nurses, community mental health nurses or staff from Alz-
heimer’s societies install these technologies?
• How can respective costs for technologies be met (i.e. should they
be freely available, as in the case of some Scandinavian countries,
or should a small user payment be levied)?
• How can local engineers be motivated to take a more active
interest in the area of designing and refining technologies?
• Should devices be loaned to people for a designated period of
time, given that their usefulness will inevitably diminish over
time?
These are all practical and relevant questions that should now enter debates on
in-home implementation of assistive devices for people with dementia and
130 Early Psychosocial Interventions in Dementia

family carers. They are also issues that need to be kept alive and brought to the
attention of policymakers, planners and those involved in the development
and delivery of educational courses directed at upskilling professionals
involved in dementia care.

References
Bjørneby, S., Topo, P. and Holthe, T. (eds) (1999) TED. Technology, Ethics and Dementia. A Guidebook
on How to Apply Technology in Dementia Care. Oslo: Norwegian Centre for Dementia Care,
INFO-banken.
Cahill, S., Begley, E., Faulkner, J.P. and Hagen, I. (2007) ‘“It gives me a sense of independence”:
findings from Ireland on the use and usefulness of assistive technologies for people with
dementia.’ Technology and Disability 19, 133–142.
Ferri, C., Prince, M., Brayne, C., Brodaty, H., et al. (2005) ‘Global prevalence of dementia: a delphi,
consensus study.’ The Lancet 366, 2112–2117.
Gallagher, C. (2006) ‘Social Policy and a Good Life in Old Age.’ In E. O’Dell (ed.) Older People in
Modern Ireland. Dublin: Johnswood Press.
Hagen, I., Holthe, T., Gilliard, J., Topo, P., et al. (2004) ‘Development of a protocol for the assessment
of assistive aids for people with dementia.’ Dementia: The International Journal of Social Research and
Practice 3, 3, 263–281.
Holthe, T., Hagen, I. and Bjorneby, S. (1999) ‘What day is it today? Using an automatic calendar.’
Journal of Dementia Care 7, 4, 26–27.
Marshall, M. (ed.) (2000) ASTRID: A Social Technological Response to Meeting the Needs of Individuals with
Dementia and their Carers. London: Hawker Publications.
McCreadie, C. and Tinker, A. (2005) ‘The acceptability of assistive technology to older people.’
Ageing & Society 25, 91–110.
O’Shea, E. (2006) ‘Public Policy for Dependent Older People in Ireland: Review and Reform.’ In E.
O’Dell (ed.) Older People in Modern Ireland. Dublin: Johnswood Press.
O’Shea, E. and O’Reilly, S. (1999a) An Action Plan for Dementia. Dublin: National Council on Ageing
and Older People.
O’Shea, E. and O’Reilly, S. (1999b) The Economic and Social Costs of Alzheimer’s Disease and Related
Dementias in Ireland: An Aggregate Analysis. Working Paper no. 25. Galway: National University of
Ireland, Department of Economics.
Patton, M. (1990) Qualitative Evaluation and Research Methods. Newbury Park: Sage.
Sweep, M.A.J. (1998) Technology for People with Dementia: User Requirements. Eindhoven, the
Netherlands: Institute for Gerontechnology, University of Technology.
Wimo, A., Jonsson, L. and Winblad, B. (2006) ‘An estimate of the worldwide prevalence and direct
costs of dementia in 2003.’ Dementia and Geriatric Cognitive Disorders 21, 175–181.
Woolham, J. (2006) Safe at Home. The Effectiveness of Assistive Technology in Supporting the Independence of
People with Dementia. London: Hawker Publications.
Woolham, J., Frisby, B., Quinn, S., Smart, W. and Moore, A. (2002) The Safe at Home Project. London:
Hawker Publications.

Further reading and related references

Bjørneby, S., Topo, P., Cahill, S., Begley, E., et al. (2004) ‘Ethical considerations in the ENABLE
project.’ Dementia 3, 3, 297–312.
Cahill, S., Begley, E., Topo, P., Saarikalle, K., et al. (2004) ‘“I know where this is going and I know it
won’t go back”: hearing the individual’s voice in dementia quality of life assessments.’ Dementia 3,
3, 313–330.
Chapman, A. (2001) ‘There’s no place like a smart home.’ Journal of Dementia Care 9, 1, 28–31.
Chapman, A. (2001) ‘A smarter system is always at hand.’ Journal of Dementia Care 9, 2, 8.
Duff, P. and Cullen, K. (1999) ‘Assistive technology: new opportunities for people with dementia
and their carers.’ Paper presented to International Conference on Ageing ‘Promoting Inde-
pendence and Quality of Life for Older Persons’. Arlington, VA.
Gilliard, J. and Hagen, I. (eds) (2004) Enabling Technologies for People with Dementia:
Cross-national Analysis Report. WP 4.5/Deliverable no. 4.5.1. Project funded by the
European Commission under the ‘Quality of Life and Management of Living Resources’
under the Framework Programme 5. Available at www.dementia-voice.org.uk/Projects/
EnableFinalProject.pdf, accessed 7 August 2008.
 Health Technologies for People with Early Dementia: The ENABLE Project 131

Kinney, J.M., Kart, C.S., Murdoch, L.D. and Conley, C.J. (2004) ‘Striving to provide safety assistance
for families of elders: the SAFE House project.’ Dementia 3, 3, 351–370.
Marshall, M. (2002) ‘Technology and technophobia.’ Journal of Dementia Care 10, 5, 14–15.
Marshall, M. (2003) ‘Not just because we can do it.’ Journal of Dementia Care 11, 6, 10.
Marshall, M., Duff, P. and Cullen, K. (2000) ‘ASTRID: introducing assistive technology.’ Journal of
Dementia Care 8, 4, 18–19.
Topo, P., Maki, O., Saarikalle, K., Clarke, N., et al. (2004) ‘Assessment of a music-based multimedia
program for people with dementia.’ Dementia: The International Journal of Social Research and Practice
3, 3.

Useful websites
www.astridguide.org, accessed 7 August 2008
www.enableproject.org, accessed 7 August 2008

ENABLE partners
Bath Institute of Medical Engineering: www.bath.ac.uk/bime, accessed 7 August 2008
Dementia Services Information and Development Centre: [email protected]
Dementia Voice: [email protected]
Inger Hagen, scientific co-ordinator: [email protected]
Norwegian Centre for Dementia Research: [email protected]
Sidsel Bjørneby: [email protected]
STAKES – National Research and Development Centre for Health and Welfare: [email protected]
Work Research Centre: [email protected]
 PART III

Psychological,
Emotional
and Social Support
Chapter 9

Group Psychotherapy
for People with Early
Dementia
Richard Cheston

Overview
Supporting and meeting the emotional needs of people with dementia are
now recognised as important aims for health and social care professionals. This
is reflected in the increasing use of psychotherapy and counselling techniques
over the last ten years. The most widespread means of using psychotherapeutic
intervention with people with dementia is probably through group work. This
is particularly beneficial in that it can create a sense of shared experience and
provide a safe environment for people to explore their internal world. Issues in
setting up a group are discussed in this chapter with particular reference to the
Dementia Voice Group Psychotherapy Project. Analysis of data collected
provided significant evidence for a treatment effect, lowering both anxiety and
depression in the group participants. In addition, a case study is provided
which highlights the way that group work can help people with dementia
‘come to terms’ with their diagnosis.
Psychotherapeutic group work with older people with a cognitive impair-
ment has been described since the early 1950s. However, it is only since
person-centred forms of care have become firmly established over the last
10 to 15 years in the UK that this form of providing emotional support
for people with dementia has begun to develop. Yet, while there has been in-
creasing interest in using psychotherapy and counselling skills with people
with dementia, relatively few studies have systematically explored the effec-
tiveness of this work. It still remains unclear, therefore, which form or forms of

135
136 Early Psychosocial Interventions in Dementia

psychotherapy – whether group or individual work, directive or non-directive,

educational or exploratory approaches – constitute the most effective inter-
vention.
One of the earliest developments of psychotherapeutic approaches with
people with dementia was that of ‘Validation therapy’ (Feil 1990, 1992,
1993). Feil suggested that in many cases neurological damage interacted with
unresolved issues from a person’s past so that those psychological defences that
had been used up to that point were no longer effective. She suggested that this
precipitated the person with dementia returning to the past in order to work
through these unresolved issues. Consequently the task of the Validation ther-
apist was to validate or support this inward journey back through time. In
order to do this, Feil stressed the importance of therapists listening with
empathy, using non-threatening questions in order to build up trust and not
confronting people with the loss of their abilities.
Feil’s work has proved to be influential – in part because she was one of the
earliest voices urging dementia care workers to take the emotional needs of
people with dementia seriously. Yet, two criticisms can be made of this way of
working. First, there is the danger that in associating the apparent confusion of
some older people with unresolved psychological issues, we risk attributing
the presence of dementia to personal, rather than organic factors. Second,
although we are all influenced by our past, there is a danger that in looking
backwards we obscure the current reality for people with dementia. Arguably
the most important psychological task for group therapists is one of helping
people to resolve current rather than past issues in their lives.

Person-centred care and group

psychotherapy
A wide range of individual psychotherapeutic work with people with demen-
tia has been described including psychodynamic (e.g. Sinason 1992), cogni-
tive behavioural (e.g. Scholey and Woods 2003; Teri and Gallagher-Thomson
1991) and humanistic (e.g. Bryden 2002; Stokes and Goudie 1990). An
evidence base for individual psychotherapy is also beginning to emerge (e.g.
Burns et al. 2005).
Despite the increasing popularity of individual forms of therapy, probably
the single most common means of using psychotherapy as a way of intervening
with people with dementia has been through group work. The review by
Cheston (1998a), for instance, identified over twice as many reports of groups
compared to work with individuals. However, this review went on to point out
that despite the increase in this form of clinical work, there was little if any sub-
stantive research evidence relating to its effectiveness.
 Group Psychotherapy for People with Early Dementia 137

Nevertheless, regardless of the lack of an available evidence base, the need

to provide psychotherapy and counselling for people with dementia is
becoming ever more apparent. This is partly because the introduction of new
medication designed to enhance levels of cognitive functioning has increased
the numbers of people with suspected Alzheimer’s disease who are presenting
themselves for assessment and diagnosis at an earlier stage. This in turn has led
to the need to provide support to enable people with dementia to grieve for
their losses and to begin the process of learning to adjust to the changes that
can come with living with dementia.
Thus, an English government document Everybody’s Business (Department
of Health 2005) has provided guidelines for local commissioners of services to
use when establishing memory assessment services. Its recommendations
include the need for pre- and post-diagnostic counselling, as well as explain-
ing the diagnosis to the person with dementia and giving information about
their prognosis and their care options.
Within this context, group work provides a number of therapeutic advan-
tages over individual counselling. In particular, by bringing together people
who might otherwise be dealing with such significant changes in isolation, it
is possible to help develop a sense that experiences are shared. This desire to
create a supportive context for people to talk about what was happening to
them was stimulated by the publication of a book by Robyn Yale (1995)
setting out how to establish, run and evaluate support groups for people with
dementia.
Yet, just as there are an enormous variety of individual forms of psycho-
therapy, so group therapists can be influenced by a wide range of therapeutic
orientations. Broadly speaking, groups for people with dementia tend to
reflect two different strands of work:
1. Educational groups. The emphasis is to teach people about their illness
and to encourage them to use a variety of strategies in order to facili-
tate adjustment to their impairments such as talks from visiting
speakers (e.g. McAfee et al. 1989), information about Alzheimer’s
disease (e.g. Haggerty 1990) and teaching memory strategies (e.g.
see Chapter 7 of this book; Thrower 1998).
2. Emotionally focused groups. The emphasis is upon helping people to
share their experiences with others. Arguably, one of the most
important aspects of a support group is to enable group participants
to feel listened to, and to feel that their experience of dementia is
important. In addition to the process of talking and sharing experi-
ences, a variety of potentially therapeutic interventions can be
employed including anxiety management skills (e.g. Marshall 2001),
138 Early Psychosocial Interventions in Dementia

focusing on relationship issues (e.g. Hawkins and Eagger 1999) and

how to cope with the loss of independence (e.g. Barton et al. 2001).

General issues in setting up a group

When thinking about establishing a group, a variety of issues needs to be
considered:
• psychological mindedness
• locating groups within a service
• co-working
• involving carers in the work.

Psychological mindedness
Decisions about who should be involved in a group are related to a wealth of
considerations, including the context in which the group is established and its
overall aims. Where, however, the aim of the group is to share experiences,
then it is important to look at the capacity of potential participants to be
involved in such work – in part this relates to their ability to communicate ef-
fectively, for instance, their cognitive level, their verbal fluency and the
presence of any sensory loss. Perhaps of at least equal significance is the psycho-
logical mindedness of group members – their ability to think about their internal
world.
My own experiences have increasingly led me to think about the impor-
tance of individuals’ personal resources prior to their developing cognitive
problems. Some people (although by no means all) who have considerable dif-
ficulties in thinking about what has happened to them might be described as
having had a rather fragile pre-morbid personality: that is to say they seem to
have been people who presented to the world an idea of themselves as a person
without imperfections, like a porcelain vase. Like the vase, their view of them-
selves was of a beautiful thing, but also delicate and easily fractured. As such
my sense is sometimes that these people, who cannot now acknowledge in
public that their memory has become flawed, also found it hard before their
illness to acknowledge imperfections in their way of being. Instead their
concern was to preserve their personal authority and prestige. Now, when they
are confronted with a gradual decline in their intellectual abilities, their
tendency is, once again, to ignore or to dismiss this evidence.
Although groups can be places that are able to tolerate many ways of
managing and thinking (or not thinking) about life, it will be important to
 Group Psychotherapy for People with Early Dementia 139

consider the balance of such methods of coping that participants to a group

bring. The best groups tend to have a balance between people who are inclined
to think (but risk being overwhelmed) and people who prefer to act (but risk
ignoring what is happening).

Locating groups within a service

Many clinical services will not be familiar with either the demands or the
needs of group work. At times this may lead to a lack of referrals or to the nec-
essary boundaries around groups being compromised. It is important then for
groups to be firmly established within the consciousness of services, and to be
seen to meet a clear service need. The service as a whole should value the role
that groups can play and permit the groups to function. In practical terms,
then, a valued place within a service would allow adequate transport for group
members, rooms for the group to meet and to assemble in without interruption
or interference, and a working space that is potentially therapeutic.

Co-working
Group work is often seen to require joint facilitators, and this in turn necessi-
tates a shared model of working and either shared supervision or a clear agree-
ment about peer supervision. Therapists cannot work together without both
the capacity for reflective thinking and opportunities to reflect together on the
work.

Involving carers in the work

Just as there is a wide range of therapeutic orientations for group work, so there
is a continuum along which carers may be involved. Where the purpose of the
group is to provide a context in which participants can explore their experi-
ences in a safe and containing manner, then the intrusion of carers into the
therapeutic space needs to be avoided. At the same time, if the group is to be
successful, then carers as much as participants need to have a commitment to
the group.
Alternatively, if the aim of the group is to provide a supportive educational
framework, then the role of carers becomes stronger. In the supportive seminar
model of working (Snyder et al. 1995), carers accompany group participants to
the first session. After they have met one another, one facilitator can meet with
the carers and the other can begin the group with the participants. Each group
can look at what people would like to get out of the group, and to think about
the worst aspect of having a memory problem. At the end of the session, the
two groups can come back together to share their thoughts.
140 Early Psychosocial Interventions in Dementia

The Dementia Voice Group Psychotherapy

project (the DVGP)
Due to the absence of methodologically appropriate studies exploring the
impact of group psychotherapy, the DVGP set out to evaluate the impact of a
ten-week intervention on participants’ levels of depression and anxiety
compared to a baseline period and follow-up. The project involved establish-
ing six psychotherapy groups across the south-west of England for people who
had been diagnosed with Alzheimer’s disease or another form of dementia. It
was funded by grants from the Mental Health Foundation and from Avon and
Wiltshire Mental Health Partnership Trust. Each group lasted for ten weeks
and was facilitated by the author in collaboration with either one or two
co-facilitators who varied from group to group.

Participants
In all 42 people took part in the groups, all of whom were assessed as having
either a mild or a moderate level of dementia. Most people lived at home with
their husband or wife, although some lived on their own or in nursing homes.
All of the participants had a Mini Mental State Exam (MMSE) score of 18 or
above, indicating that they had a mild or moderate level of cognitive
impairment.

Therapeutic aims
The central aim of these groups was to bring people with dementia together to
talk about ‘what it’s like when your memory doesn’t work as well as it used to
do’. Participants were encouraged to share their experiences with each other
and to discuss the emotional impact of these experiences on them.

The need to listen and bear witness

The groups in this project focused upon the experiences of participants in the
here and now, and upon the impact of these experiences upon relationships,
including those formed within the matrix of the group. The task for group par-
ticipants was to think about ‘what it’s like when your memory isn’t as good as it
used to be’. The task of the group therapists was to facilitate this process of re-
flection by interpreting material that was brought to the group in terms of its
underlying emotional significance and within the context of the group pro-
cesses. As such this approach differs markedly from other therapeutic forms of
work with people with dementia such as Validation Therapy, Life-review
Therapy (e.g. Garland 1994) or Reminiscence Therapy (e.g. Bender 1994). A
fuller description of the use of this style of working within a group setting with
 Group Psychotherapy for People with Early Dementia 141

people with dementia can be found elsewhere (Cheston 1998b; Cheston and
Jones 2002; Cheston, Jones and Gilliard 2003a).

Analysis of results
Participants and their carers were interviewed at four different points: about
six weeks before the groups started; at the start of the groups; at the end of the
groups; and ten weeks after the groups had finished. Twenty-seven people
finished the groups and the follow-up period, and baseline data were available
from 19 of these participants. Tape recordings of one of the groups were also
made to enable a more detailed examination of the process of change occur-
ring within the groups.

Changes in levels of depression and anxiety

Data was collected independently of the facilitators by a research officer for
Dementia Voice (Kerry Jones). Statistical analysis of the data from those 19
participants who completed all three phases of the project provided significant
evidence for a treatment effect lowering levels of both anxiety and depression.
This change was maintained at follow-up. For the eight participants who
joined at the start of the intervention phase, there was evidence of a significant
fall in levels of anxiety but not depression. In addition, significantly more
group members showed evidence of reliable change in levels of depression
during the intervention period compared to either the baseline or the
follow-up periods (Cheston et al. 2003b).

Case example – Robert –

changes in awareness
Although it is important to establish the impact of the groups on levels of
anxiety and depression, of equal importance is the way in which
individuals within the group gradually ‘came to terms’ with their
diagnosis. In psychotherapeutic terms, this growth of awareness can be
viewed as a process in which difficult experiences or thoughts are first of
all pushed away, and then gradually worked through. As an individual
becomes aware of these problematic experiences, so their level of
anxiety or distress initially increases but then subsides as the experiences
become gradually assimilated into their existing patterns of awareness.
Watkins et al. (2006) have analysed tape recordings from the ten
sessions over which a different group ran. They focused on the changes
in awareness shown as the group progressed by one group participant,
Robert. During the first session Robert defined his problem as a selective
loss of short-term memory that did not affect other areas of his life. He
referred to other people that he knew at a club that he attended, saying
142 Early Psychosocial Interventions in Dementia

that ‘half of them have got Alzheimer’s or something near’. Watkins et

al. (2006) suggest that during this session he was in a position of
warding off awareness of both his diagnostic status and the implications
of this.
Without doubt the pivotal session for Robert individually, and
perhaps collectively for the group as a whole, was session four. In this
session, a series of participants in the group responded to Robert’s
challenge (‘I don’t think that anyone here has Alzheimer’s disease’) by
asserting not only that they did have Alzheimer’s disease but that they felt
frightened, guilty or ashamed at the knowledge. Whereas before this
session Robert had not acknowledged that he had Alzheimer’s disease,
after it he never again denied that he did have the disease. An example
of this change in Robert’s accounting for his memory problems was
shown in session seven in which he joked about having had the results
from a computerised tomography (CT) scan fed back to him:
Robert: I got the results back yesterday and it said that my brain had
shrunk very, very slightly in the cavity, which is fairly
symptomatic of the onset of Alzheimer’s. And so I asked, ‘If it’s
the onset, what happens when you’re there’ [group laughs]…
and he said, ‘Very little more’ [laughter]. I mean if you get to
the point where you couldn’t remember anything at all then the
brain wouldn’t have got any smaller but it’s this shrinkage that
brings about this symptom of short-term memory loss, which is
quite intriguing. So I’m not particularly bothered by it, but it
was interesting to go through it.
In the ninth session Robert reflected upon how he had changed over the
course of the group:
Robert: I don’t see the problem now the way, the problem of declining
memory, the way I did before…
Janet: You didn’t accept it then before?
Robert: Well I did accept it but it frightened me. But I thought, well, I’m
going mad, I’m going crazy. I thought what am I going to be
like in another five years?

In the complex mesh of emotional states that surround a problematic experi-

ence such as a diagnosis of having Alzheimer’s disease, it is possible to distin-
guish between primary emotions caused by the experience itself (e.g. loss,
grief, rage, fear) and secondary emotions that involve an indirect response to
these primary emotions. One of the most significant of these secondary re-
sponses is that of shame – for instance, in the reaction that it is shameful to be
weak and that displaying one’s emotions is embarrassing. It is often these sec-
ondary emotions that inhibit the emotional processing of the problematic
 Group Psychotherapy for People with Early Dementia 143

material and which prevent the material from being properly assimilated into
existing schemata. In this regard it is particularly interesting that prominent in
the discussions in week four was the acknowledgement by many participants
of their emotional unease about the diagnosis. For instance, one participant
(Jenny) talked about her dread that she would become ‘useless, you know. Not
having all my faculties’.
Watkins et al. (2006) suggested that in addressing these secondary
emotions the group facilitated the processing of the primary emotions by par-
ticipants. It may be that the group achieves much of its therapeutic potency
through, in Yalom’s terms (1970), a sense of universality – that the shared
nature of this condition means that to have Alzheimer’s disease is not shameful,
and that to express one’s distress in a safe and containing environment is not
embarrassing.

Conclusion
Although research evidence is only just beginning to emerge to support the
use of psychotherapeutic group work with people with dementia, there are im-
portant signs that this form of work can enable group participants to work
through some of the emotional consequences that dementia brings with it. As
group participants work through some of these issues, so they can feel that
they are not alone and thus that their position is not hopeless. Consequently, as
Cheston et al. (2003b) suggest, there is evidence that levels of anxiety and de-
pression may reduce.
Yet the evidence base for psychotherapy with people with dementia is
only just beginning to emerge and several caveats are important: first, not all
people with dementia will be suitable for, or may benefit from, group work;
second, the nature of group work can vary enormously, and not all forms of
group work may be therapeutic. Interestingly, an as yet unpublished
small-scale study that I have led has compared a directive and structured edu-
cational group with the sort of group used during the DVGP. Although the
number of people in each arm of this study was small (only eight people
received each intervention), those in the exploratory groups showed similar
levels of improvement in their levels of depression and anxiety, while those in
the educational groups became worse. One of the crucial differences in the ex-
ploratory and directive groups was that in the latter there was much less oppor-
tunity to make sense out of their own feelings, and instead participants were
provided with a much greater level of information, possibly before they were
ready to manage it adequately.
The central element of group work, then, may well be the opportunity to
offer people time and space to think about themselves in the context of other
144 Early Psychosocial Interventions in Dementia

people: other people both similar and dissimilar to themselves. The process of
meeting others in a similar position brings both hope and threat: hope because
to experience others in a similar position is to have a sense of not being on
one’s own; threat because this process is one in which change can be made real.
A central task for group facilitators is to manage the tensions within the group
as participants deal with these themes of hope and threat. In doing so, the
group alternates between approaching and avoiding the nature of their
similarity.
A fundamental aim of group work is to provide a safe environment in
which participants are able to explore their own emotional world. These
groups provided a setting in which people can gain a sense that they have not
been forgotten, that they will be remembered, that what has happened has
been important. As one group member said: ‘Just because I’ve got a failing
memory, doesn’t mean that I’m a failure.’

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Cheston, R., Jones, K. and Gilliard, J. (2003b) ‘Group psychotherapy and people with dementia.’
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Garland, J. (1994) ‘What Splendour, It All Coheres: Life-review Therapy with Older People.’ In J.
Bornat (ed.) Reminiscence Reviewed: Perspectives, Evaluations, Achievements. Maidenhead: Open
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Disease and Related Disorders and Research, Nov/Dec, 18–22.
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Marshall, A. (2001) ‘Coping in early dementia: the findings of a new type of support group.’
Unpublished PhD thesis, University of Surrey.
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Further reading and related references

Cheston, R. (1996) ‘Stories and metaphors: talking about the past in a psychotherapy group for
people with dementia.’ Ageing and Society 16, 579–602.
Cheston, R. (2004) ‘Top-dogs and Under-dogs: Marginalising Problematic Voices.’ In A. Innes, C.
Archibald and C. Murphy (eds) Dementia: An Inclusive Future? Marginalised Groups and Marginalised
Areas of Dementia Research. London: Jessica Kingsley Publishers.
Cheston, R. (2005) ‘Shame and avoidance: issues of remembering and forgetting with people with
dementia.’ Context: The Magazine for Family Therapy and Systemic Practice 77, 19–22.
Cheston, R. and Bender, M. (1999) Understanding Dementia: The Man with the Worried Eyes. London:
Jessica Kingsley Publishers.
Cheston, R., Jones, K. and Gilliard, J. (2004) ‘Falling into a hole: narrative and emotional change in a
psychotherapy group for people with dementia.’ Dementia: The International Journal of Social
Research and Policy 3, 95–103.
Cheston, R., Jones, K. and Gilliard, J. (2006) ‘Psychotherapeutic Groups for People with Dementia:
the Dementia Voice Group Psychotherapy Project.’ In B.M.L. Miesen and G.M.M. Jones (eds)
Care-giving in Dementia: Research and Applications 4. New York, NY: Brunner-Routledge.
Goudie, F. (2002a) ‘Trauma and Dementia.’ In G. Stokes and F. Goudie (eds) The Essential Dementia
Care Handbook. Bicester: Speechmark.
Goudie, F. (2002b) ‘Working with Psychological Distress.’ In G. Stokes and F. Goudie (eds) The
Essential Dementia Care Handbook. Bicester: Speechmark.
Sabat, S.C. (2002) ‘Epistemological issues in the study of insight in people with Alzheimer’s disease.’
Dementia: The International Journal of Social Research and Policy 1, 279–293.
Sutton, L. (2003) ‘When late life brings a diagnosis of Alzheimer’s disease and early life brought
trauma. A cognitive-analytic understanding of loss of mind.’ Clinical Psychology and Psychotherapy
10, 156–164.
Chapter 10

Art Therapy
Getting in Touch with Inner
Self and Outside World
Steffi Urbas

Overview
Art therapy has been used as one component of a ‘self-maintenance’ rehabilita-
tion programme for people with early stage dementia in Germany for some
time (Romero and Wenz 2001). It reflects a person-centred intervention that
focuses on the positive attributes of the person engaging with it. Art therapy is
based on the underlying assumption that everyone can be creative at some
level. The self-portraits of William Utermohlen, who has Alzheimer’s disease,
have raised awareness in the medical world of creativity and the brain (Crutch,
Isaacs and Rossor 2001). Art therapy, however, represents a psychosocial inter-
vention that is concerned with how people with dementia may actually benefit
from art. It is suggested that art therapy allows people with dementia the time
to focus, express themselves, and recapture a sense of control – all aspects of
their former lives that they may have progressively lost to their disease. This
chapter summarises the wide-ranging scope of art and art therapy in dementia
care, and outlines how art therapy was used as an individualised psychosocial
intervention at the Alzheimer Therapy Centre in Germany. The case studies
describe how people with dementia have learned to express themselves
through art. The examples have been selected to demonstrate some of the re-
curring themes that are often present in the art work created by people with
dementia.

146
 Art Therapy: Getting in Touch with Inner Self and Outside World 147

Rationale: art therapy and dementia

Art therapy can be conceptually grouped with the creative therapies that
include the use of metaphor (Killick 2005), poetry, dance, song and music.
These are often collectively described as the ‘arts therapies’ and can be used
to facilitate change or ‘access the person’ who has reduced or absent verbal
expression due to chronic neurological diseases (Waller 2002a). This chapter
will specifically focus on art, to the exclusion of other forms of creative thera-
pies, since art therapy was one of the components of an individualised
self-maintenance therapeutic rehabilitative programme at the Alzheimer’s
Therapy Centre in Germany (Romero and Wenz 2001). It has also been
evaluated in one small controlled trial of group therapy in early stage
dementia in the UK (Sheppard et al. 1998; Waller 1999, 2001, 2002b).
Art has emerged as an important therapeutic activity that can provide a
channel of communication (MacGregor 2005) and in the UK there are a
number of Alzheimer’s Society projects where volunteers and people living
with dementia and family carers use art to enjoy relationships (Driver 2005;
Mitchell 2006; Neal 1996). These dementia care art projects occur in a variety
of settings such as drop-in centres (Mitchell 2006), within ordinary commu-
nity facilities (Driver 2005), as one-off voluntary sector ventures (Baker
2004), at day units using paid staff and therapists (Benham 2004; Meadows
2004; Ridley and Parker 1996; Wilson 2001) and within hospitals (Tyler
2002). Some projects include family carers as volunteers or participants
(Driver 2005; Mitchell 2006; Neal 1996).
The types of art used to support people with early dementia range from
pleasurable activity within art classes (Driver 2005), modelling at a heritage
centre (Mitchell 2006), making murals over a week at an Alzheimer’s Society
premises (Neal 1996), making collages and creative rugs as an activity at a day
hospital (Meadows 2004), developing an individualised banner with the help
of an artist and occupational therapist at a day hospital (Baker 2004), using a
self-expression closed group at a day hospital to express the experience of
dementia (Benham 2004) and, with the help of trained art therapists, to
express the painful emotions that are encountered in the course of dementia
(Osler 1988; Waller 1999).
Art therapy has been used with young and older people who have
dementia (Cossio 2002; Falk 2002; Tyler 2002; Waller 1999, 2002b) and can
be applied within groups (Cossio 2002; Falk 2002; Tyler 2002; Waller 1999,
2002b) or within individual sessions (Liebmann 2002; Tyler 2002; Wilson
2001).
148 Early Psychosocial Interventions in Dementia

The next section describes art therapy as an early individualised psycho-

social intervention, which contributes to the self-maintenance rehabilitation
programme at the Alzheimer Therapy Centre in Germany.

Getting in touch with inner self and

outside world
Art therapy is a form of non-verbal psychotherapy that uses visual imagery
where the processes of painting, drawing or sculpting provide a space for indi-
vidual expression and creative engagement with the self in action and social
engagement. It is therefore concerned not just with experiencing a fulfilling
encounter with the self, but also with satisfaction of a basic human need for
active and successful engagement with the environment. These two corner-
stones of quality of life are, in general, rarely experienced by people with Alz-
heimer’s in their everyday life. It is the art therapist’s task to offer a therapeutic
space providing experiences that address these basic needs. This is achieved
through sensitive understanding of individual resources and needs, strengths
and preferences.
The pictures that accompany this chapter were initially prepared as large
colour paintings. Each originally formed part of a series of pictures demon-
strating the encounter with the self and with the outside world that can take
place in the context of art therapy. They have been chosen because, even when
presented as small monochrome images as they are here, they still convey
powerful emotions. Even though they cannot explain the developing process
of therapy, they still provide an insight into the varied possibilities of the
therapeutic work.

Without words
In art therapy it is possible to express ideas and feelings that cannot be
conveyed in words. This is particularly important in the case of people with
language impairments. Art therapy works with the striving and protestation of
the spirit as it seeks expression and audience. Listen to the lament of a clergy-
man experiencing the early signs of Alzheimer’s disease:

Sunken in lonely darkness

In the hidden hours
I am silent towards heaven
And stay dumb.

My words fail me
My memory is vanishing
 Art Therapy: Getting in Touch with Inner Self and Outside World 149

I am lost in a
Ghetto of silence.

I can no longer express myself

In the darkness of memory of speechlessness
I seek my memory and speech.

Yet one thing remains –

My soul protests
About accepting the bitterness,
A broken, already spiritless life.

The theme of being shut off from contact with the environment, trapped in an
individual world of increasing speechlessness, is pervasive for people with
Alzheimer’s. This is expressed in the picture titled ‘Without Words’ (Figure.
10.1), painted by a man with early stage dementia. He had allowed himself to
be ensnared by the verbal limitations imposed on him as a result of the illness,
and had begun to react with depressive withdrawal and sarcasm towards
himself and towards life in general. As his art therapist, at each session in the
studio, I presented him anew with the challenge of facing the unexpected vi-
cissitudes of life. From simple painting on A4 pages to the joint development
of a big group picture, from watercolours and brush to finger painting with the

Figure 10.1 ‘Without Words’

150 Early Psychosocial Interventions in Dementia

whole hand, to making a mask for a fancy-dress event, he dared over and over
again to overcome his own shadow. In an informal setting that offered care and
respect, this intellectually oriented man overcame his ‘But I can’t do that!’ and
‘But that’s silly!’ and increasingly discovered pleasure in spontaneous expres-
sion. The repeated expression of a creative impulse, which he very consciously
accepted as psychologically beneficial, seemed to kindle in him a new sense of
courage, and a belief that he could triumph over obstacles. At the end of
therapy he spoke of a flame, which he experienced as something new in
himself, and which he wanted to keep alive through engaging in a range of
activities.

Dancing around one’s inner being

Art therapy can help people with dementia to make contact with their inner
being, enabling them to find and develop their own inner resources. During
free painting with no specific instructions, irrespective of the stage of illness,
circular shapes frequently emerge. In producing these circular shapes, one
person moves the brush with a sweep, another quite cautiously, the next with a
flourish, another with intense concentration. The mandala always rotates
around a central point – clarity and simplicity in a life that is characterised by
confusion as familiar associations disintegrate. Often the mandalas grow from
the inside out with each new revolution, just like the opening of a flower. The
experience of painting is an expansion of the self which creates space – a thera-
peutic progression – especially for people who feel small and frightened
because of the nature of their illness.
Angela, a shy and timid woman, sketched her first pictures very fast,
almost as if she was frightened to take too much time for herself. But soon she
was dancing during the development of her mandalas (Figure 10.2) with a
happy smile on her face, and taking more and more time for herself.

Figure 10.2 Angela’s ‘mandalas’

 Art Therapy: Getting in Touch with Inner Self and Outside World 151

Strengthening the self through repetition

People with dementia are known to be masters of repetition. Often they can
feel trapped in their repetition. Even more frequently, they feel hurt when their
carers react with an abrupt ‘Not that again!’ Listen to the words of one man as
he ‘recovered’ from his knowledge of having a progressive dementia:
When a few islands emerge amidst a fog of fleeting memories, perhaps at
any given moment just a single island onto which I can jump, then that’s
what I do. By continually seeking it out and telling myself and others about
it, because I can remember it, even if I don’t know anything about it, I
enable this memory to stay alive. Naturally I want to be sure of my island,
my anchor in a sea of forgetting!
The image above allows the therapist (and even the family carer) to go along
with the person with dementia in their tendency towards repetition. By going
along with the person, not just patiently but enthusiastically, using the
repeated construction of a motif, the therapist can enhance a sense of security
in the person with dementia. After a stay at the Alzheimer Therapy Centre, for
example, one man with advanced dementia continued, with considerable per-
severance and with the greatest of pleasure, to draw a whole series of pictures
that were composed ‘only’ of straight, horizontal lines.
Repetition of a motif can often show us, in quite a dramatic way, what the
central elements are in the way a person experiences his or her world. Often it
is possible to discern a personal theme which the person needs to communicate
to the outside world and to make real to him- or herself. A priest, for example,
painted a church in almost every picture, and sometimes two. In so doing, he
expressed the steadfastness of his faith. He came right to the point when he
said, ‘I am a religious man, after all.’ The same man went through a phase in
which he repeatedly expressed a vivid memory of a holiday through different
variations on a particular motif (Figures 10.3).

Acting on spontaneous impulses

and instincts
‘Free painting’ is a central component of my art therapeutic work with people
who have dementia. This involves me giving them as much space as possible,
and the minimum possible amount of instruction and help. It also means that
on the whole (not least because of obvious signs of apraxia or an expectation of
apraxic difficulties), I encourage people to engage in abstract expression.
People with dementia who in their daily lives receive regular feedback on all
the things they are doing wrong, are encouraged, while painting, to follow
their own immediate impulses and to trust their own instincts. Where this is
152 Early Psychosocial Interventions in Dementia

Figure 10.3 The priest’s holidays

successful, the encounter with oneself can be deep and therapeutic. The end
result is a set of paintings which, by aligning with the individual’s life force,
represents authentic self-expression and communicates the painter’s individual
strengths.
Betty had mild dementia with good verbal abilities but noticeable apraxic
difficulties. It was she who went to the doctor because she had noticed changes
in herself, and it was she who insisted that the doctors take her seriously. She
appeared to be a very determined woman, and she argued a great deal with her
husband, who was caring for her. She described herself as ‘a fighter’, and on
the one hand she was proud of this, but on the other she also acknowledged
that she often made life difficult for herself and others. In therapy, she worked
on this theme very independently, with striking results. In contrast to her ex-
pectations (‘That’s definitely not for me!’) she quickly took pleasure in ‘free
 Art Therapy: Getting in Touch with Inner Self and Outside World 153

painting’ and gained confidence in her artistic abilities. Then, one day, she
came to therapy with a determined expression on her face, intending to paint a
beautiful picture of sunflowers. Unhappy with the first attempt, she tried hard
at a second, with similar results. In discussion afterwards she said, ‘I got an idea
into my head again, and I thought I absolutely had to make it come out –
typical!’ and seemed relieved. At this point she made a conscious decision to
treat herself more gently, and from then on she painted with eager spontaneity
and joyful discovery. In doing so, she restricted herself to one colour at any one
time. ‘Otherwise I’ll just get wound up about which colours go together,’ she
explained. Each time she was newly astounded at her efforts. Full of pleasure,
she would talk about the emerging evidence of her motivation along the fol-
lowing lines: ‘I had nothing definite in mind. The pictures just emerged from
inside me.’

Expressing and presenting self

Artistic activity produces therapeutic results where the individual’s present life
force is facilitated and developed, reaching expression in a picture, a model, or
perhaps simply in a gesture. It is about the experience of facing up to oneself,
getting to know oneself, and accepting oneself. Moreover, the experience of
achieving expression through creative activity is a means of presenting the self
to others. When they are able to enter into this process observantly, therapists
can experience something of and through the person who has brought the
creative work into being. Art therapy creates ways of getting in contact with
the inner self and with the outside world.

Conclusion
The examples described outline common themes that are observed when using
art therapy with individuals who have dementia, that is, expression of oneself
without words, making contact with the inner self to facilitate change,
strengthening the self through repetition, acting on spontaneous impulses and
instincts and expressing and presenting the self. Through artistic endeavours,
people with dementia can reacquaint themselves with spontaneous ‘let
yourself go’ enjoyment. This is important on a number of levels. It allows the
person to ‘scratch beneath the surface’ of their disease and dig deeper to
remind themselves of their capabilities, and get to know themselves again.
They have the opportunity to do something for fun, which demands only that
they ‘have a go’, and which allows them to be as creative and imaginative as
they wish. On another level, however, as they focus and engage with the task at
154 Early Psychosocial Interventions in Dementia

hand they can regain a sense of control, belief in themselves, and perhaps
courage. In addition, their art work can act as self-expression, at a time when
this may not be available to them through any other means.

Acknowledgements
Art therapy as used at the Alzheimer’s Therapy Centre described in this chapter
is based on a talk given at the Alzheimer Europe 10th Anniversary Meeting,
Munich, October 2000, and is an adapted translation of the German-language
text published in the Proceedings of the Alzheimer Europe 10th Anniversary Meeting.
The chapter has been updated by the editors since its inception in 2001.

References
Baker, S. (2004) ‘How the arts can reveal a stairway of hope: Sandwell Third Age Arts.’ Journal of
Dementia Care 12, 6, 21.
Benham, L. (2004) ‘How the arts can reveal a stairway of hope: an abstract.’ Journal of Dementia Care
12, 6, 20.
Cossio, A. (2002) ‘Art Therapy in the Treatment of Chronic Invalidating Conditions: From
Parkinson’s Disease to Alzheimer’s.’ In D. Waller (ed.) Art Therapies and Progressive Illness. Hove:
Brunner-Routledge.
Crutch, S.J., Isaacs, R. and Rossor, M.N. (2001) ‘Some workmen can blame their tools: artistic change
in an individual with Alzheimer’s disease.’ The Lancet 357, 2129–2133.
Driver, B. (2005) ‘Art in action.’ Journal of Dementia Care 13, 6, 21.
Falk, B. (2002) ‘A Narrowed Sense of Space: An Art Therapy Group with Young Alzheimer’s
Sufferers.’ In D. Waller (ed.) Art Therapies and Progressive Illness. Hove: Brunner-Routledge.
Killick, J. (2005) ‘Making sense of dementia through metaphor.’ Journal of Dementia Care 13, 1,
22–23.
Liebmann, M. (2002) ‘Working with elderly Asian clients.’ Inscape 7, 2, 72–80.
MacGregor, K. (2005) ‘Activities that paint a thousand words.’ Journal of Dementia Care 13, 6, 19–20.
Meadows, G. (2004) ‘How the arts can reveal a stairway of hope: art and craft.’ Journal of Dementia Care
12, 6, 21.
Mitchell, R. (2006) ‘Meet Angus and Theresa.’ Journal of Dementia Care 14, 2, 5.
Neal, D. (1996) ‘All things bright and beautiful.’ Journal of Dementia Care 4, 1, 21.
Osler, I. (1988) ‘Creativity’s influence on a case of dementia.’ Inscape, Summer, 20–22.
Ridley, C. and Parker, J. (1996) ‘A promise of things to come: the Grange Day Unit mural project.’
Journal of Dementia Care 4, 1, 22–24.
Romero, B. and Wenz, M. (2001) ‘Self-maintenance Therapy in Alzheimer’s Disease.’ In L. Clare and
R.T. Woods (eds) Neuropsychological Rehabilitation in Dementia. Hove: Psychology Press.
Sheppard, L., Rusted, J., Waller, D. and McInally, F. (1998) ‘Evaluating art therapy for older people
with dementia: a control group trial.’ Group Analysis 39, 517–536.
Tyler, J. (2002) ‘Art Therapy with Older Adults Clinically Diagnosed as Having Alzheimer’s Disease
and Dementia.’ In D. Waller (ed.) Art Therapies and Progressive Illness. Hove: Brunner-Routledge.
Waller, D. (1999) ‘Art therapy: a channel to express sadness and loss.’ Journal of Dementia Care 7, 3,
16–17.
Waller, D. (2001) ‘Art therapy and dementia: an update on work in progress.’ Inscape 6, 2, 67–68.
Waller, D. (ed.) (2002a) Art Therapies and Progressive Illness. Hove: Brunner-Routledge.
Waller, D. (2002b) ‘Evaluating the Use of Art Therapy for Older People with Dementia: A Control
Group Study.’ In D. Waller (ed.) Art Therapies and Progressive Illness. Hove: Brunner-Routledge.
Wilson, P. (2001) ‘Going with the flow: art workshops for everyone.’ Journal of Dementia Care 9, 4,
14–15.
 Art Therapy: Getting in Touch with Inner Self and Outside World 155

Further reading and related references

Beaujon-Couch, J. (1997) ‘Behind the veil: mandala drawings by dementia patients.’ Journal of the
American Art Therapy Association 14, 187–193.
Kamar, O. (1997) ‘Light and death: art therapy with a patient with Alzheimer’s disease.’ American
Journal of Art Therapy 35, 120–121.
Khan-Denis, K. (1997) ‘Art therapy with geriatric dementia clients.’ Journal of the American Art Therapy
Association 14, 194–199.
Steritt, P.F. and Pokorny, M.E. (1994) ‘Art actvities for patients with Alzheimer’s and related
disorders.’ Geriatric Nursing 15, 155–159.
Tingley, N. (2002) ‘Art as Therapy for Parkinson’s.’ In D. Waller (ed.) Art Therapies and Progressive
Illness. Hove: Brunner-Routledge.
Urbas, S. (2000) ‘Kunsttherapie mit Demenzkranken.’ In Deutsche Alzheimer Gesellschaft (ed.)
Forttschritte und Defizite im Problemfeld Demenz. Referate auf dem 2. Kongreb der Deutschen
Alzheimer Gesellschaft, Berlin, 9–11 September 1999. Berlin: Deutsche Alzheimer
Gesellschaft.
Chapter 11

A Host of Golden
Memories
Individual and Couples
Group Reminiscence
Irene Carr, Karen Jarvis
and Esme Moniz-Cook

Overview
The evidence base for the effectiveness of reminiscence in dementia care is
thin, since not many robust studies have been carried out (Woods et al. 2005).
However, reminiscence as both a group activity and a method of interacting
with people with dementia and their families remains popular, as seen in the
pan-European ‘Remembering Yesterday, Caring Today’ reminiscence project
which was evaluated by Bruce and Gibson (1999a). Practical suggestions for
working with people with dementia, including training materials, have been
developed (see, for example, Disch 1988; Gibson 1994a, 1994b; Murphy
1994, 1995; Norris 1986) and Age Exchange, based in London, has been par-
ticularly active in this area (Bruce, Hodgson and Schweitzer 1999; Schweitzer
1993, 1998, 1999). The therapeutic purposes of reminiscence and the need
for adequate training and supervision when carrying out this type of work
have also been emphasised (Bender, Bauckham and Norris 1999) and family
carers are increasingly becoming involved in reminiscence therapy (Woods et
al. 2005). In this chapter we describe individualised, in-home, family-based
reminiscence and a couples group programme for older people with early
dementia and their families. Two case studies are presented using in-home life
story work and collage as methods of maintaining family relationships,
pleasure and identity in early dementia. The couples group programme, ‘Re-

156
 A Host of Golden Memories: Individual and Couples Group Reminiscence 157

kindling the Past – Enlivening the Present’ facilitated by two Alzheimer’s

Society volunteers, with people and their families from the Hull Memory
Clinic and its evaluation, are then described. This couples group programme
developed by the volunteers was used as an early intervention to enhance new
pleasurable activity and social relationships for both the person with dementia
and their primary family carer.
Pan-European studies of the use of reminiscence for people with dementia
living at home (see Schweitzer 1999) and in care homes (see Penhale et al.
1998) have been supported by the European Commission, with projects in-
volving local communities, volunteers and the arts. Activities such as individ-
ual or group reminiscence, oral history, life review and life story work all share
some commonalties which may be included within the broad umbrella of rem-
iniscence (see Bornat 1994). Whilst definitions can be somewhat blurred, rem-
iniscence has been broadly seen as follows:
Groups of older people…whose main concern is the retrieval of past expe-
riences and its recording and preservation in some way can be said to be
taking part in oral history. When those same groups share memories with a
view to understanding each other, or a shared situation, or with the aim of
bringing about some change in their current lives, they are involved in remi-
niscence work. (Murphy 1994, p.1)
Given this definition, it is hardly surprising that reminiscence has usually been
carried out as a group activity. Life review, life story work and collage, on the
other hand, tend to be undertaken as one-to-one or triangulated activities, in-
volving the individual together with perhaps a close family member or friend
and a facilitator or co-ordinator of the activity. Whilst, as we shall see later,
there is a place for group-based reminiscence as an early intervention, indi-
vidualised family-based reminiscence can have an important place in reinforc-
ing family relationships. In the early stages of a dementia the relationship
between the person and their primary family supporter (e.g. a spouse or
adult-child), can become subtly undermined due to word-finding problems,
reduced conversation and social withdrawal, all of which are seen by the
family as ‘changes in the person’.
When the diagnosis of dementia is provided, for example, in the context of
a memory clinic, it is important that people are supported to maintain normal
interpersonal routines and lifestyles, whilst actively using adaptive coping
strategies such as ‘the fighting spirit’ and ‘dementia disease minimisation’
where necessary, in order to maintain self-confidence, esteem and a sense of
self. Individualised family-based reminiscence activities, such as life story
work, may therefore be more suitable than an organised group activity, for use
with people and their family or friends, in the earlier stages of dementia.
158 Early Psychosocial Interventions in Dementia

As the term ‘life review’ implies, an integral part of this activity is the
review and evaluation of past life events and the use of past experiences to help
cope with some of life’s transitions and the milestones of old age. Life story
work (Murphy 1995; Murphy and Moyes 1997) is an equally individualised
approach, but with perhaps a wider scope of potential rehabilitative benefit
and opportunity. To some extent it can be viewed within the discipline of
health promotion, since health is defined as ‘a resource for living rather than
merely the absence of disease’ (World Health Organisation 1986). It can be
used proactively to develop and maintain relationships, to promote conversa-
tions and pleasurable activity and to enhance psychological well-being. As the
disease progresses it can provide a visual resource to help the person with
dementia and others to maintain a sense of the person’s identity and enhance
communication and relationships. Life story work can take a number of forms
including the production of tangible end points such as reminiscence boxes,
life story books and collages.
Life story books and collage not only dwell on personal narrative but also
employ a rich source of sensory cues to encourage positive expression in indi-
viduals who can thus tell their own unique life stories. This may include both
factual and anecdotal reflections on their past and present lives and possible
hopes and aspirations for the future. In this way the project can become a plea-
surable, positive and meaningful activity. Elizabeth Shipway describes how,
when she was clearing out her mother’s flat following the move into residential
care, she began a life story book with her mother. During the shared activity,
her mother was able to forget her distress at having to leave her own flat, and
eight months later they had reached 1936 in the ‘journey’ of their shared book
(Shipway 1999). Murphy (1995) suggests that the product of life story work,
whether this is a book or collage or whether it takes some other format, should
never be put aside as completed, as to do so would be to imply that the individ-
ual’s life is over, or without hope.
Collage work, pioneered in the city of Hull, UK, like life story books, has
its theoretical roots within the reminiscence literature in general and life
review in particular (see Bruce et al. 1999). It may, however, also be associated
with the developing range of creative approaches to dementia care, such as the
therapeutic use of the arts (Killick and Allen 1999; Lawrence 1998; Neal
1996; Waller 1999; see Chapter 10 of this volume), which may be a way of
promoting self-expression as a form of communication and as an activity of
aesthetic intent (Allen and Killick 2000). In Hull, collage has been used as a
therapeutic activity with older individuals with and without dementia in a
clinical mental health setting (see, for example, Jarvis 1997, 1998a, 1998b;
2000a, 2000b), with staff in enhancing personal relationships with people
with challenging behaviour in dementia (Moniz-Cook, Woods and Richards
 A Host of Golden Memories: Individual and Couples Group Reminiscence 159

2001) and also as one aspect of group activity described later in this chapter,
within the ‘Rekindling the Past – Enlivening the Present’ couples group
project. The procedure itself differs from other types of art and collage work in
dementia care, such as group collage (see, for example, Bruce et al. 1999, p.42;
Jagger 2000), making group murals (Neal 1996) and art therapy group work
(Waller 1999). As with life story books, collage also aims to enhance the self or
identity of the person with dementia, and there are many similarities between
this way of working and using a life story book. However, the end product is
different, since it is displayed on one large sheet or poster (see Jarvis 2001 and
Figure 11.1), rather than in the format of a book or folder. It may be more
suitable for people whose fear has precipitated mood and associated cognitive
problems with attention. Assessment for the best method of life story work (i.e.
books, collages or boxes) should be considered in the context of the person’s
circumstances (Murphy and Moyes 1997) as we shall see in the two case
studies presented. The use of life story books and collage as an early interven-
tion with people with dementia within their family context will be considered
next.

Developing life story books and collage

Developing life story books and collage can be used as a pleasurable therapeu-
tic process, to stimulate conversation, to reinforce and demonstrate retained
skills, to validate and reinforce personal achievements and also as a cathartic
prompt. Once developed, life story books are equally effective as a personal
expression of oneself, a memory aid, a conversation tool for use with family
and friends, a means of providing distraction and/or reassurance during
episodes of distress and even as a record of the individual’s life for future
generations.
The simplest form of a life story book or collage reflects a collection of an-
ecdotes, pictures and personal memorabilia. These artefacts can have particular
symbolic meaning for the person. For example, one person included a small
square of flannelette, which reminded her of her days as a young mother when
she tucked her daughter up at night. Another individual’s life story book con-
tained a strongly smelling polishing cloth which he had used regularly to clean
his car during his long years as a driver. It is not always necessary to focus
overly on the written narrative, since for some people, particularly those with
dysphasia, this may reduce their interest and ownership of the activity. Equally,
any narrative that is used in a life story book should, as closely as possible, rep-
resent the individual’s usual terminology and language, since a worker’s
personal interpretation may lead to the need for the individual to overly focus
on the dialogue, thus reducing spontaneity and potentially limiting its future
160 Early Psychosocial Interventions in Dementia

use as a memory prompt. For similar reasons it is not always important to rely
too heavily on factual accuracy when developing life story books or collage.
An overview or ‘snapshot’ of a meaningful recollection or event is often far
more productive.
Although essentially a fluid and flexible process, a number of key stages
are usually observed in conducting life story book or collage work. For
example, it is essential to establish the person’s, and if appropriate, the carer’s,
willingness and motivation to carry out the activity. Often this can best be
achieved by careful explanation and practical demonstration of other consent-
ing individuals’ life story books or collages. Once consent has been estab-
lished, the visual format, title and general presentation of the book should be
discussed with the individual and, if they so wish, with the family or friend.
This is followed by mutually agreeing the topics, taking care to actively avoid
past regrets and upset for both the person and the family member. Often the
discussion follows the person’s life milestones, such as schooldays, family life,
holidays, and so on, prior to perhaps the most enjoyable part of the activity:
talking, reflecting, exploring ideas and gathering the memorabilia which may
be used to create the book or collage. However, when developing a life story
book or collage it is not necessary to go through all of the person’s life stages
and it is more important to draw out the one or two aspects of life that have
particular pleasure and meaning for the person. These are often related to
family, work or certain hobbies. Once the decision has been made to create a
life story it is important that the therapist provides structure to enhance the use
of resources, but does not direct or lead the person, since this is the person’s or
couple’s own expression of identity and relationships or picture.

Life story books and collage

Should these be used with everyone who has dementia?
It is not suggested here that life story books and collage, or indeed reminis-
cence itself, are appropriate for everyone. Indeed, it is important to consider
through a careful evaluation of the person and family who may not benefit, or
indeed who may become unduly distressed by the process of life review and
reminiscence (Bender et al. 1999), before deciding to develop a life story book
or collage. Sensitivity to potential contraindications of the use of reminiscence
in dementia, before discussing the possibility of either of these procedures, is
important. This may be achieved by allowing time for a relationship to
develop between the therapist and the person and his or her family.
Collage and life story books are clearly not always possible with people
who have serious visual impairment. Furthermore, certain topics that may arise
during the making of a life story book or collage, as with reminiscence and life
 A Host of Golden Memories: Individual and Couples Group Reminiscence 161

review in general, may cause distress in people with dementia who have expe-
rienced past trauma. In people with dementia who may have frontal lobe
damage, there is then the risk that the person might perseverate on (i.e. get
stuck on the theme of ) the past trauma which may then be difficult to resolve,
resulting in exacerbated distress for the person. It is also important to consider
past and previous family tensions and relationships prior to beginning life
story work. For example, one person required reassurance throughout that her
ex-husband would not be able to access her life story book.
The choice of format, content, impetus and how it is used are all important
considerations prior to engaging in life story work (Murphy and Moyes
1997). If an adequate psychosocial assessment has occurred, we suggest that
there is a growing window of opportunity to achieve greater effectiveness
with people in the earlier stages of dementia for whom, despite difficulties in
retaining new memories, old memories and some aspects of conversation often
remain relatively accessible.
Similarly, collage has been used with people with and without dementia.
One example of its use is with a terminally ill person, where it provided a
meaningful way of addressing life issues for the person and became a treasured
keepsake for the relative (Jarvis 1997). Benefits include reduction in anxiety
and depression, and improvements in self-esteem. Descriptions of life story
collage and its positive outcomes with individuals with dementia and their
families can be found in Bruce et al. (1999, p.28) and Jarvis (1998a, 1998b;
2000a, 2000b).
Next, two case vignettes are presented to demonstrate the use of life story
books and collage. The first describes a person who was referred to the Hull
Memory Clinic for early diagnosis and possible intervention. A life story book
complemented other equally important psychosocial interventions during
quite a traumatic and demanding period of his life. The second describes the
use of collage with a person who was referred to a community mental health
team for older people, and was supported by a community psychiatric nurse
and staff at a day hospital for people with dementia. Here, his collage helped
him to interact with his son when the effects of dementia and anxiety had dis-
rupted their relationship.

Out of the shadows

Eric and Mary and their family’s life story book
Eric, a stoic 70-year-old man, was referred by his GP to the Hull Memory
Clinic in October 1997 as a result of his wife’s growing concerns about his
absent-mindedness and reduced initiative. Meeting the couple for assessment
was in itself both interesting and enjoyable for the staff. Mary was a gregarious
162 Early Psychosocial Interventions in Dementia

extrovert, flamboyantly dressed and keen to take centre stage. Eric, the person
who was referred, on the other hand, was strong and silent, with a dry sense of
humour. It quickly became apparent that he had been his wife’s ‘rock’ through-
out their life together and had protected and generally supported her through
any number of ‘madcap’ (their terminology) ideas and schemes.
This loving couple had an only daughter, married with one son (known
affectionately as his grandmother’s heartbeat!). Not surprisingly, given the
energy and drive that the couple portrayed, their daughter saw them as
somewhat larger than life figures and could not easily comprehend their po-
tential decline or ultimate mortality.
Eric’s diagnosis of vascular dementia of approximately three years’
duration, therefore, came as an enormous shock to them. His wife desperately
wanted to continue their happy life together and to find ways for Eric to avoid
making simple yet annoying mistakes, like leaving the front door open and not
putting the milk back in the fridge. His daughter needed much more emo-
tional support and education about prognosis and coping. She was open to
new ideas and responded well to advice and demonstration provided by the
memory clinic nurse. Thus she understood the need to avoid ‘deskilling’ her
father, and the importance of helping him to manage life using well-rehearsed
routines and external memory aids to prevent or compensate for common
errors. These strategies were extremely successful in managing practical
aspects of his daily life. However, they were powerless to address the family’s
emotional loss of their ‘rock and mainstay’, whose personality and character
they began to describe as ‘shadowy’ and less defined. Nor did these interven-
tions enable Eric to explain and express his own insight into his difficulties and
fears for the future.
It was therefore suggested to him that he might like, with support from his
family and the memory clinic nurse, to develop a life story book, which would
be a special piece of work that he, as the biographer, would take the lead in. He
was keen to take up this challenge and spent many happy hours in lofts,
garages and cupboards finding photographs and memorabilia.
The ensuing discussions proved to be an animated and humorous inclu-
sion to his usual routines. He and his wife were able to laugh together at each
other’s past failings and triumphs. Conversation became easier between the
couple and the family began once again to see Eric’s underlying character, his
retained skills and ultimately his need for emotional support.
Some weeks into this process Mary became increasingly unwell and was
subsequently diagnosed as having a secondary brain tumour. Following two
major operations she died, some six months later. Throughout her deteriora-
tion the life story book was regularly brought out, reminisced over and added
 A Host of Golden Memories: Individual and Couples Group Reminiscence 163

to. It also served as an emotional cue and cathartic prompt shortly following
Mary’s death. Despite being totally bereft, Eric was unable to find either the
right words or responses to his own grief or that of others. His sister-in-law, in
particular, found this distressing and could not, therefore, easily communicate
or offer her support. However, with encouragement, he described and talked
to her about his married life with her sister, and a new companionable level of
grief and understanding was reached, which helped a little in the overall
process of grieving and moving on. With support from family, community
services, regular routines, and memory prompts, Eric has successfully managed
day-to-day activities and still, surprisingly, remains in his own home. Unfortu-
nately, his physical health has recently deteriorated (as is often the case in
vascular dementia where co-morbid physical health problems can be promi-
nent) and he may require permanent residential care in the next year or so. One
can only speculate at this stage whether his personal life story book might be
supportive in ensuring a smooth transition on to the next stage of his life, when
that occurs. It is hoped that either ourselves and/or his daughter may help him
to use his book to enable care staff to understand him as a person and to assist
him in the adjustment to the social environment of the care home.

From anger to laughter

Harold and his son’s improved communication using collage
Harold had been suffering with memory loss for over a year. His son was the
main carer, living at home and looking after both his father, Harold, and his
mother, who had very poor physical health.
Harold attended a day hospital and also had periodic respite care,
although he did not enjoy being away from home. When at home, Harold
spent his time repeating himself, often argued and sometimes lost his temper.
He was in denial about his memory problems and whilst this minimisation of
his problems may have served him well (see Stokes 2000, p.57); it appeared to
place a strain on his son’s ability to cope.
When the community psychiatric nurse visited Harold at home, it quickly
became clear how much he enjoyed reminiscing. Together with the nurse,
Harold looked at photographs that were special to him and talked about his
memories. Harold provided her with photographs and other memorabilia that
he had selected. She obtained photocopies, and from these she assembled his
collage. When Harold was shown the collage, he was clearly moved; his eyes
filled and he immediately spoke about everything on it with fondness. On a
later visit he stated that it was so precious to him that he was going to include it
in his will, with a clear indication of who should inherit it.
164 Early Psychosocial Interventions in Dementia

Figure 11.1 Harold’s collage

Harold’s son reported that their relationship had improved. He said that when
Harold became fixed on an idea, or began arguing, the collage provided an
easy way of changing the content of their conversation from negative to
positive. Harold’s short-term memory problems did not affect his ability to
talk about the collage, or his recall of events surrounding the collage content.
Any conversation about the collage clearly lifted his mood and following this
Harold was frequently observed to be laughing or joking with others. Clearly
his presentation had changed, which in turn reduced the burden and stress ex-
perienced by his son.

Validating past experience and present

personhood
Whatever the format of the end product (a book or a collage), life story work
allows individuals with memory difficulties or early stage dementia to ‘tell’
their own unique stories and to reflect on their past and future lives. It is impor-
tant to remember, however, that these are mere tools, and attention needs to be
 A Host of Golden Memories: Individual and Couples Group Reminiscence 165

paid to the way in which they are used (Murphy and Moyes 1997). Engaging
with people with dementia and their families using therapeutic life story work
and reminiscence will continue to require sensitivity as well as training and su-
pervision (see Bender et al. 1999; Bornat 1994).
In the case studies described above, different formats (i.e. a book and
collage) were used for people with early dementia who had different
psychosocial circumstances, and the impetus to do the work came from within
a relationship between the nurse and the person with dementia. In both cases
the content was guided by the person, and in the first case the changing cir-
cumstances within the family allowed the work to remain ongoing and to help
with adjustment to a life transition. In both case studies the life story book and
collage contributed to the provision of positive interaction and emotional ex-
periences. Life story work allows validation of both past experience and
present personhood, and the person’s sense of ‘self ’ may be strengthened
through these creative and enjoyable activities. Use of these creative methods
of self-expression may have an important role in counteracting the disease
model of dementia that is often associated with the diagnostic process under-
taken in the early stages of a developing dementia. This process may, for some
people with dementia, result in withdrawal and social isolation and ultimately
depression, particularly if the relationship between the person and the family
is undermined as families progress to becoming ‘carers’. Life story work in the
early stages of dementia provides the context for pleasurable but powerful ac-
tivities that may help to prevent the extra disabilities that are often a conse-
quence of reduced self-confidence and social withdrawal in people, and
acceleration to becoming a ‘carer’ for the family member.

Couples group reminiscence: ‘Rekindling

the Past – Enlivening the Present’
Providing emotional support for people with early dementia through group
therapy is an important early intervention (see Jones, Cheston and Gillard
2002), but it is also helpful for some people and their families to also meet
with others, in order to reinforce normal social relationships through engaging
in pleasurable activity. Structured reminiscence is a shared activity that most
people can engage in, including those who have poor conversation skills, as
there are always aspects of the past that can provide pleasure. It therefore lends
itself to early group-based psychosocial intervention, for those people and
family members who have become socially isolated due to the subtle interper-
sonal and social consequences that can arise from the insidious changes in
early dementia.
166 Early Psychosocial Interventions in Dementia

The ‘Rekindling the Past – Enlivening the Present’ group reminiscence

programme for people who were diagnosed at the Hull Memory Clinic with an
early dementia, and their family (or friend) was developed at the Hull Drop-in
Memory Centre in 2002, by two volunteers from the local Alzheimer’s Society.
The primary objective of the couples group programme was to promote plea-
surable social activity and interpersonal communication through structured
reminiscence, with the family carer acting as ‘therapist’ and both the person
and the carer contributing to the natural social context that is required to
promote new relationships and thus reduce social isolation. The centre’s ob-
jectives were to provide an enriched psychosocial venue with activities that
could maximise the positive resources of people with dementia and their
families. Thus, where a person and their primary family supporter or carer had
indicated at the point of diagnosis that they had (a) lost pleasure in each other
due to the developing dementia or (b) become fearful of being apart from each
other, or (c) become socially isolated, bringing them together within a remi-
niscence group with others was seen as a way of providing an enriched plea-
surable social environment for both the person and the family.
People below the age of 65 and their spouses who fitted this profile were
initially included. However, all of these declined to continue after the first
session. They reported that reminiscence activities did not bring them
pleasure, but instead exacerbated their fear of ageing and dementia.
In order to establish the groups, the following prerequisites were needed:
• access to community transport
• a regular meeting place with a telephone point of contact between
sessions for families to raise questions and concerns
• a comfortable, suitably furnished room
• availability of space including another quiet room to talk privately
at breaks
• a large table for collage and group work
• television and video availability for themed discussions
• easy access to refreshments and toilets.
Three groups were conducted by two facilitators including one who was a
former family carer, over a period of 12 months. Up to five couples participated
in each group and in each case people were matched to groups based on their
personal customs, culture, everyday life interests and age. Most participants
used their own transport, taxis or community transport, and each session took
place on an afternoon from 1.30 pm to 3.30 pm. The weekly sessions were
 A Host of Golden Memories: Individual and Couples Group Reminiscence 167

devised to follow largely biographical experiences with sessions two to eight

acting as a time for participants to select meaningful material that they would
use for their end product, i.e. the life story book and/or the collage. The
ten-week session plan is shown below, but for each group this was adjusted to
follow participants’ customs, interests and past experiences:
• Week 1 Introductions/Getting to know you
• Week 2 Schooldays
• Week 3 Work
• Week 4 Marriage/Family/Celebrations
• Week 5 Happy holidays/Days out/Memories of favourite
films and shows
• Week 6/7 Visits to significant places in Hull such as the docks,
significant streets or participant’s demonstration of
favoured activity (baking, embroidery or shipping
collection exhibitions); hobbies
• Week 7/6 Visiting speaker with a one-twelfth scale model of a
1950s terraced house and an ‘open all hours’ shop, used
to promote discussion and for some groups to arrange
visits
• Week 8 Memories of the war (this was not included in all
groups but incorporated within sessions two to five,
allowing an extra session to cover content of week six)
• Week 9 Commence collage/life story book
• Week 10 Complete collage/life story book.
Keeping activities inclusive and relevant were core principles of the groups. As
facilitators got to know the participants and learned of their life experiences,
relevant memorabilia were sourced to encourage participation and memories.
Well-planned activities to stimulate discussion are an important stimulus
(Bruce and Gibson 1999b) and theme-based activity was included in each
session. Session five was particularly well received as it engaged a local charity
which made creative miniatures of past local shops and homes. This allowed
participants to recall their past dwellings, which some subsequently visited
and photographed for their collage. Following a teabreak, a facilitated discus-
sion covered what particular memorabilia were important to each couple and
might be included in their life story. The session ended with written home-
work and a summary of arrangements for the following week.
168 Early Psychosocial Interventions in Dementia

A case study of couples group

reminiscence
One group consisted of four men with an early dementia and their spouses.
The men were keen to do something to improve their memory but also wished
to please their wives, who they were aware had taken on more day-to-day ac-
tivities since they had developed memory problems (see Chapter 12 of this
volume). Their wives, on the other hand, were keen that their partners had
‘social stimulation’ as according to them the spouse was ‘no longer himself ’
and had withdrawn from conversation and social activity. They were also
themselves somewhat lonely, as they were sad about their perceived loss of
companionship, since their husband ‘was no longer the man they knew’.
Group attendance allowed the subtle but negative effects of dementia on
family carers to become balanced by the joint celebration of good times past
and the realisation that it was possible for a person to change but also to retain
valued aspects of their identity. For example, one previously reserved man
enjoyed telling the group about his time at the docks and his animation sur-
prised and gave much pleasure to his wife who had not heard him talk freely
for many months. There were also numerous examples, especially during
weeks three to five, and the final sessions, when couples demonstrated their
sense of commitment and gratitude towards each other (Schweitzer 1998).
To assist the men in understanding the relationship between memory and
reminiscence they completed a pre-group measure using the Autobiographical
Memory Interview (AMI, Kopelman, Wilson and Baddeley 1990), followed
by attendance at a talk on autobiographical memory as compared to other
forms of memory, prior to the couples reminiscence group. The AMI measures
a person’s recall of facts from their own past life (Personal Semantic Schedule,
PSS) and recall of specific incidents (Autobiographical Incident Schedule,
AIS). Table 11.1 shows the Autobiographical Memory Interview results for
each of the four men prior to and following group-based reminiscence.

Table 11.1 Results of Autobiographical Memory Interview (AMI) scores

Name Pre-intervention score Post-intervention score
PSS ASI PSS ASI
Len 32 3 30 1
George 48 24 57 27
Eric 50 11 50.5 16
William 57.5 13 61 14
Total 187.5 51 198.5 58
 A Host of Golden Memories: Individual and Couples Group Reminiscence 169

The total group scores on the AMI improved post intervention, and for three
men both the PSS and AIS scores improved. George’s ability to recall actual
facts from his past life improved quite significantly, much to his pleasure. Not
only was detail more accurate, but the information was also recalled more fre-
quently. Eric’s ability to recall facts remained largely the same, but the richness
of his recall for autobiographical incidents was enhanced and his pleasure as he
described events was evident.
The men themselves enjoyed meeting each other and they and their wives
continued to maintain their friendships, with the other group members and
group members wives’ respectively, after the group ended. Two couples began
a regular outing to the swimming pool and two others joined a walking club
together. All four couples met at each other’s homes for tea approximately once
a month in the year that followed. Additionally, two couples scanned their
collage and had these framed for family members, whilst one made Christmas
cards for family with theirs.

Practical guidelines for developing life

story books and collages
Full guidelines for making a collage may be found in Jarvis (2001). The advice
that follows should be considered in the making of either a life story book or a
collage:
• Decide on the format – life story book or collage – based on a
careful psychosocial assessment and discussion with the person.
• Think in advance about potential family tensions or obstacles that
might hinder the person in developing and using their life story
work.
• Avoid unhappy or disturbing events, sadness or loss, including
past trauma and situations of failed relationships. Reassure the
person that you are only interested in aspects of their past that
they wish to share with the people they choose.
• For life story books, spend some time with the person agreeing
what the book should be called and how it should be presented.
For example, Gladys wanted to call her book ‘My Book of
Memories’, whilst Jane called her book ‘ My Life Story’. In terms
of presentation, Gladys used a green ring binder with a picture of
a rose (her favourite flower and the name of her sister) on the
cover. Jane used a painting that she had done in the past for the
cover of a scrapbook which reflected her chosen theme of past
170 Early Psychosocial Interventions in Dementia

achievements as a mother and homemaker who enjoyed baking,

floral arrangements and painting watercolours.
• Ensure that the person is allowed the time to select the photo-
graphs and any other materials they might want to include. If
there is repetition in the material, or there are copious amounts of
materials, discuss whether one or more collages would be appro-
priate. There could be different themes incorporated in one large
collage, or several collages representing different themes that are
important to the person. Similarly, different pages or sections in a
life story book could represent different themes.
• If there is a general theme, additional source material can be found
in newspapers or magazines. For instance, if the person loves
gardening, seed packets and pictures of plants or pressed flowers
could be used, but it is always important to discuss the selection
process with the person and, if appropriate, with the family.
• For life story books, it is important to use large text and to use the
person’s own style and vocabulary in written material.
• With the person’s permission, photocopy or scan original photo-
graphs and materials in order that the originals may be returned to
the person or family. Colours can be varied or tints can be used;
sepia colour themes can be discussed if the person has any prefer-
ences. The focus should be on the person’s colour preferences and
not the staff’s. Colour itself has significance in different religions.
Some people may be superstitious and may attach meaning to
certain colours, or the person may be reminded of something by a
particular colour (see Stokes 2000, pp.104–105 with regard to
purple; Moniz-Cook et al. 2001, the case of Jack and the colour
green).
• Encourage the person to participate as much as possible – with
collage, by laying out the materials to form a picture for the
collage, and for a life story book by participating in decisions on
presentation, in laying things out and in sticking in photographs.
Think about and negotiate sizes and colour schemes to best
convey the theme or the individual’s preferences. For the collage,
agree on the final arrangement before adhesion – a spray type of
adhesive is a user-friendly medium, though other glues can be
used and may be more cost effective.
 A Host of Golden Memories: Individual and Couples Group Reminiscence 171

• The finished collage and the cover of a life story book can be
laminated. This is practical as it does not tear and can be wiped
clean. Some people have enjoyed framing their collage as a
permanent memento for the future.
When beginning collage work and life story books, the following items of
equipment are likely to be useful:
• Choice of potential coloured ring binder folders, scrapbooks and
specimens of specially designed photograph albums that are often
available from bookshops. The latter may be somewhat restrictive
but can be useful for some people who have particular preferences.
Examples of these are:

° Short, P. (1993) My Life Story. Springfield Leisure Art Collec-

tion, 47 Yarborough Road, Wroxall, Isle of Wight, PO38
3EA.

° Short, P. (1993) Memory Diary. Springfield Leisure Art Collec-

tion (address above).

° Pettigren, J. and Woodin, M. (1992) From Grandmother with

Love. London: Little Brown.

° Pedersen, J. and Taylor-Smith, A. (1995) Grandparents’ Book.

London: Four Seasons.

° Sheppard, L. and Rusted, J. (1999) A Pocket Book of Memories.

London: Hawker Publications.

• Coloured pencils or pens.

• Paints.
• Scissors or scalpel.
• Glue stick or adhesive spray.
• Coloured paper or card (A3 is a good working size and practical
for photocopying) for collages.
• Self-healing mat, or thick pad for cutting materials on.
• Metal ruler.
• Paper to laminate.
• Scanner and colour printer.
172 Early Psychosocial Interventions in Dementia

Conclusion
Developing an identity-reinforcing product through life story books and
collage can be a means of enhancing pleasurable in-home family relationships
and reducing interpersonal anxiety or social withdrawal in early dementia.
However, engaging people in new group activity including reminiscence can
be problematic, as many people with early dementia are fearful of ‘showing
themselves up’ (Moniz-Cook and Vernooij-Dassen 2006). Structured couples
group reminiscence set in acceptable social and physical environments has the
potential to counteract this fear and also provide the social context for new re-
lationships, particularly where people and their families have become socially
isolated. We suggest that structuring reminiscence as a group activity to
include shared events from the past, including those that bring pleasure, is the
intervention of choice if introducing people with dementia and families to
new social situations and groups is the identified goal for rehabilitation. The
functions of home-based and couples group reminiscence may differ in early
dementia, but the enjoyment and therapeutic benefits of enhanced social con-
fidence and reduced carer distress remain an important means of preventing
excess disabilities in dementia. Our experience in the Hull Memory Clinic
early intervention programme suggests that the reminiscence activities we used
were not appreciated by younger people with dementia and their families.

Acknowledgements
Thanks to Joan Rennardson and Christine Elston (Alzheimer’s Society, Hull
Branch), who developed and conducted the couples group reminiscence
programme between 2002 and 2005 at the Hull Drop-in Memory Centre.
The ‘Rekindling the Past – Enlivening the Present’ couples reminiscence
project was pioneered by Joan Rennardson, who was successful in obtaining
an After Dementia: Millennium Award Grant to run the project.

References
Allen, K. and Killick J. (2000) ‘Undiminished possibility: the arts in dementia care.’ Journal of Dementia
Care 8, 3, 16–18.
Bender, M., Bauckham, P. and Norris, A. (1999) The Therapeutic Purposes of Reminiscence. London:
Sage.
Bornat, J. (ed.) (1994) Reminiscence Reviewed. Maidenhead: Open University Press.
Bruce, E. and Gibson, F. (1999a) ‘Remembering yesterday: having fun, making friends.’ Journal of
Dementia Care 7, 3, 28–29.
Bruce, E. and Gibson, F. (1999b) ‘Remembering yesterday: stimulating communication.’ Journal of
Dementia Care 7, 2, 18–19.
Bruce, E., Hodgson, S. and Schweitzer, P. (1999) Reminiscing with People with Dementia: A Handbook for
Carers. London: Age Exchange.
Disch, R. (ed.) (1988) Twenty Years of the Life Review: Theoretical and Practical Considerations. New York,
NY: Howarth Press.
Gibson, F. (1994a) Reminiscence and Recall. London: Age Concern Books.
 A Host of Golden Memories: Individual and Couples Group Reminiscence 173

Gibson, F. (1994b) ‘Reading around…reminiscence.’ Journal of Dementia Care 2, 3, 24–25.

Jagger, B. (2000) ‘Roses all year in memory lane.’ Journal of Dementia Care 8, 5, 16.
Jarvis, K. (1997) ‘I remember me.’ Signpost 2, 3, 18–19.
Jarvis, K. (1998a) ‘Recovering a lost sense of identity.’ Journal of Dementia Care 6, 3, 7–8.
Jarvis, K. (1998b) ‘The way we were.’ Nursing Times 94, 38–39.
Jarvis, K. (2000a) ‘Collage and memory.’ Community Practitioner 73, 5, 593–594.
Jarvis, K. (2000b) ‘Stolen moments.’ Nursing Standard 14, 16–17.
Jarvis, K. (2001) Collage and Dementia: A Practical Guide for Carers and Care-workers. London:
Alzheimer’s Society.
Jones, K., Cheston, R. and Gilliard, J. (2002) ‘Sharing problems through group psychotherapy.’
Journal of Dementia Care 10, 3, 22–23.
Killick, J. and Allen, K. (1999) ‘The arts in dementia care: tapping a rich resource.’ Journal of Dementia
Care 7, 4, 35–38.
Kopelman, M., Wilson, B.A. and Baddeley, A. (1990) Autobiographical Memory Interview. London:
Harcourt Assessment.
Lawrence, L. (1998) ‘Using the arts to cross boundaries.’ Journal of Dementia Care 6, 2, 22–24.
Moniz-Cook, E., Woods, R. and Richards, K. (2001) ‘Functional analysis of challenging behaviour:
the role of superstition.’ International Journal of Geriatric Psychiatry 16, 45–56.
Moniz-Cook, E. and Vernooij-Dassen, M. (2006) Editorial: ‘Timely psychosocial intervention in
dementia: a primary care perspective.’ Dementia 5, 307–315.
Murphy, C. (1994) It Started with a Sea-Shell: Life Story Work and People with Dementia. Stirling: Dementia
Services Development Centre.
Murphy, C. (1995) ‘This is your life.’ Journal of Dementia Care 3, 2, 9–10.
Murphy, C. and Moyes, M. (1997) ‘Life Story Work.’ In M. Marshall (ed.) State of the Art in Dementia
Care. London: Centre for Policy on Ageing.
Neal, D. (1996) ‘All things bright and beautiful.’ Journal of Dementia Care 4, 1, 21–24.
Norris, A. (1986) Reminiscence with Elderly People. Bicester: Winslow Press.
Penhale, B., Bradley, G., Parker, J., Manthorpe, J., et al. (1998) EQUAL: Enhancing the Quality of Life of
People with Alzheimer’s Disease. Final report for the European Commission under the Action for Alzheimer’s
Disease Framework. Hull: University of Hull.
Schweitzer, P. (1993) The Reminiscence Handbook: Ideas for Creative Activities with Older People. London:
Age Exchange.
Schweitzer, P. (1998) Reminiscence in Dementia Care. London: Age Exchange.
Schweitzer, P. (1999) ‘Remembering yesterday: a European perspective.’ Journal of Dementia Care 7, 1,
18–21.
Shipway, E. (1999) ‘Creating a life story book.’ Alzheimer’s Disease Society Newsletter, February, 4.
Stokes, G. (2000) Challenging Behaviour in Dementia. A Person-Centred Approach. Bicester: Winslow
Press.
Waller, D. (1999) ‘Art therapy: a channel to express sadness and loss.’ Journal of Dementia Care 7, 3,
16–19.
Woods, B., Spector, A., Jones, C., Orrell, M. and Davies, S. (2005) ‘Reminiscence therapy for
dementia.’ The Cochrane Database of Systematic Reviews, Issue 2. Chichester: Wiley.
World Health Organisation (1986) Ottawa Charter for Health Promotion. Ottawa, ON: Canadian Public
Health Association.

Further reading and related references

Keady, J., Clarke, C.L. and Adams, T. (eds) (2003) Community Mental Health Nursing and Dementia Care:
Practice Perspectives. Maidenhead: Open University Press.
Marshall, M. (ed.) (1997) State of the Art in Dementia Care. London: Centre for Policy on Ageing.
Schweitzer, P. (2005) ‘Making memories matter: a project of the European Reminiscence Network.’
Dementia 4, 450.
Thorgrimsen, L., Schweitzer, P. and Orrell, M. (2003) ‘Evaluating reminiscence in dementia care.’
Journal of Dementia Care 11, 5, 35–36.
Chapter 12

Developing Group
Support for Men with Mild
Cognitive Difficulties
and Early Dementia
Jill Manthorpe and Esme Moniz-Cook

Overview
Within an early detection and intervention service for people aged over 65
years with memory impairments in the north of England, practitioners became
aware of a number of men who had few opportunities to meet other men in
this position. Most had an early dementia and all were living in their own
homes. These men were at risk of developing depression, due to social with-
drawal because of their perceived cognitive difficulties. This had resulted in a
reduced social life and undermining of their social identities. The opportunity
to meet men in a similar position of their own generation, in their own homes
on a regular basis, was thought likely to increase social activity, reduce social
isolation and, in the longer term, reduce the risk of depression. This chapter
describes the setting up and organisation of such groups, the content and ex-
periences during meetings and the outcomes for members.

Rationale: background and evidence for a

men’s group
People with dementia living at home when compared with those without
dementia, tend to have reduced social networks, increased family contact and
less time spent with friends, neighbours and community groups (Wenger

174
 Developing Group Support for Men with Mild Cognitive Difficulties 175

1994). This is not surprising as there is a ‘routine and unremarkable compo-

nent of family life’ (Forbat 2005, p.18) that family members should take care
of each other. While men are increasingly more likely to be carers, because they
are now living longer than in the previous decade, normative gendered expec-
tations about the role of women in caring still exist.
There is a wealth of literature on the beneficial effect of experiential social
support and, more recently, self-help groups (Chapter 9; Henderson 1990;
Lees 2006; Mills and Bartlett 2006). Groups can provide support, contact with
others, stimulate people to think, feel and act, and meet the psychological and
social needs that we all have (Bender, Norris and Bauckham 1987; de
Klerk-Rubin 1995; Mason, Clare and Pistrang 2005). They may develop into
opportunities for service users to offer service providers feedback and advice
in health and social care provision. They can also provide an informal opportu-
nity for people to discuss their problems if they wish. Socially oriented groups
and activities have the potential to engage people who are in the early stages of
a disability or illness to adjust to loss of skills and confidence.
In many parts of the UK, contact or support groups for people with
dementia exist in most localities and knowing how to get in touch with them
for support is perceived to be one of the advantages of early diagnosis (Iliffe
and Manthorpe 2004). While the existence of stigma surrounding the label of
dementia may contribute to reluctance in thinking about discussing dementia
outside the family, support groups are more prevalent than individual counsel-
ling for people with early stage dementia in the UK, although, as Cheston
(1998) observed, this may be as much a matter of resource efficiency as the
proven efficacy of a given type of group. Whilst group opportunity is growing,
it is still the case that they are only available to a minority (Mason et al. 2005).
It is known that individuals differ in their experiences of receiving a diag-
nosis of dementia and that these take place in the context of relationships.
However, apart from a few accounts (see Pearce, Clare and Pistrang 2002;
Rainsford and Waring 2005; van Dijkhurzen, Clare and Pearce 2006) there is
surprisingly little discussion of the impact of gender in groups. More women
than men have dementia, and women are often majority users of services and
compose the bulk of practitioners in health and social care. Professions such as
social work, for example, largely consist of women working with women
(White 2006). Older women seem to find using services more acceptable than
men (Scott and Wenger 1995) and this may be because they are used to being
in female environments. Local contexts are also likely to be important in demo-
graphic profiles of service users. For example, in areas where early male mor-
tality is high, notably in poorer and former industrialised localities in countries
such as the UK, men may not be major users of services for people in later life.
176 Early Psychosocial Interventions in Dementia

Dementia care service users and practitioners, for example, often contain
much greater proportions of women than men. Commentators therefore argue
that this helps to account for inadequate prioritisation and resources within
services (Bender 2003). This context may affect service uptake by perceived
minority groups, such as men. In addition, widowed, divorced and never
married men, for example, often have more restricted social networks, engage
in more health risky behaviours, and are more materially disadvantaged than
older married men (Age Concern Surrey 2006). All these characteristics may
mean that they are not likely to join groups of their own volition. In support-
ing their sense of identity, men may prefer different forms of social involve-
ment as compared with women (Davidson, Daly and Archer 2003). They also
appear to delay in their access of health professionals (Davidson et al. 2003).
Thus, gender continues to structure male experiences and activities. Further-
more, work on the experiences of being widowed in later life has found that
some men find it hard to recover their lost contacts with friends and that their
support networks may decrease in size as they age (Chambers 2005; Davidson
2000).
Some services have developed activities that acknowledge diversity among
their user groups. These include groups or activities for carers, for younger
people with dementia, for people from particular ethnic groups or cultures. With
the ‘discovery’ (Fisher 1994) of male carers, social and health care services in the
UK began to see gender as an important social-demographic characteristic
among older people. The Age Concern Surrey report (2006, p.40), for example,
describes a group for older men in a social centre that has made sustained efforts
to attract men, by having speakers and a more explicit structure in an effort to be
more acceptable. Archibald (1994) reported that ‘special’ places for men in
service settings may help them feel less constrained and may enable them to talk
about shared interests or backgrounds. Not all men, of course, wish to socialise
with other men and a cautionary note was made by Age Concern Surrey that
sometimes practitioners over-emphasised men’s desire to mix in male company:
Professionals were inclined to stress the need for men to be able to meet
other men, but many (by no means all) of the men interviewed were keen to
meet with women as they missed female companionship. (Age Concern
Surrey 2006, p.13)

Dementia and risks of depression

Feelings such as turmoil, helplessness, and diminished self-esteem are often
evident when people with newly recognised early dementia talk together in
support groups (Snyder et al. 1995). Receiving a diagnosis of dementia with
 Developing Group Support for Men with Mild Cognitive Difficulties 177

the breaking of the bad news may contribute to depression, even when people
have strong social supports. Facing the prospect of losses may emerge quickly,
possibly compounded by the reactions of others, and the individual affected
may ponder on their implications. The risk of depression is high. One UK
study estimated that 63 per cent of people with Alzheimer’s disease also have
depression symptoms (Burns, Jacoby and Levy 1990). Another, from the USA,
found that 30 per cent of people with Alzheimer’s disease met the criteria for
major depression (Teri and Reifler 1987). Bender (2003) notes the impact of
the collapse of assumptions as a person begins to realise that his or her memory
is failing, then starts to realise that his or her body and brain are no longer
functioning properly and that everything in life feels uncertain and potentially
unstable.
Clearly many of the discussions that practitioners might have with a
person who has early dementia – about their future wishes, or about fulfilling
some of their ambitions and dreams, or about making plans for their living ar-
rangements and finances – may be matters that might prove difficult for a
person with depression (Manthorpe and Iliffe 2005). Such a person may not
feel up to attending some of the support groups that provide self-help or those
with therapeutic aims. As is seen in the groups described by Cheston, Jones and
Gilliard (2006; Chapter 9), many such groups provide a valuable social
function. However, this very characteristic and the way the group is publicised
may be worrying for some people with depression. To counteract such reluc-
tance, while acknowledging people’s rights to makes their own decisions,
practitioners Manthorpe and Iliffe (2005) recommend that practitioners try
the following:
• Offer to take and stay with a person during the group.
• Encourage relatives or carers to make use of support groups even
if the person they are supporting does not want to attend, or
attend with them (Chapter 14); set up one-to-one professional or
volunteer visits at home, equipped with an outline of a support
group’s programme, to provide the person with the same informa-
tion, to some degree, until they feel ready to attend one.
• Ask another member of the group to make contact with the
person before the group, so as to reduce the worry of not
knowing anyone.
• Talk to group leaders about their possible difficulties and ways of
accommodating a person with depression in some or all of the
group’s activities.
178 Early Psychosocial Interventions in Dementia

Being in a minority in any such group may be a cause of anxiety – for example,
the only man in such a setting may feel very isolated or self-conscious. The vol-
untary sector in England has recently observed that its activities are often
perceived as ‘feminised’ and that there is a lack of front-line male staff or
volunteers (Ruxton 2006).

Developing men’s social groups

Keady and Nolan (1995) noted that approaches to dementia care are increas-
ingly focusing on carers’ needs. They argued for a focus on the person with
dementia, especially in the early stages. The groups described in this chapter
were attempts to provide a structure whereby men could develop coping strat-
egies to manage their memory loss and associated disability. While relief or a
break for their family carers was an added spin-off for some, the aim of
person-centred groups can be to offer support to men with early dementia in a
context where they may feel some affinity with their peers. For current genera-
tions of men, a common experience of national service or enlistment may be
unifying to a degree and most men have also several decades of work or trade
experiences (see Box 12.1).

Box 12.1 Background of three men in one group

Thomas: Used to be a carpenter. He talked about an isolated occasion
of ‘getting lost’ for seven hours. The police and his friends were out
looking for him. He said he was not lost but he had wanted to go for a
long walk and had walked to his previous home. He said he enjoys
going for a walk each day. He walks about 10 to 12 miles a week.
William: Used to be an accountant. He retired about ten years ago and
is now 80 years old. He has two children, a son and a daughter. He was
in the armed services for nearly ten years, where he met his wife in Italy.
Alan: Left school at the age of 14 years. He then worked in a cinema
selling confectionery. He did this for about two years and was then
promoted to work as a projectionist. Alan continued with this job until
he was called up to go into the Air Force. When he left the service he
decided he did not want to work nights again and turned his hand to
working for an electronics company. Alan stated that he did many jobs
within this company and remained with them until his retirement.
 Developing Group Support for Men with Mild Cognitive Difficulties 179

The introductory chapter of this book notes that groups for people with
dementia may have a number of functions. These may include provision of
psycho-educational or social support, cognitive stimulation, psychotherapy,
and reminiscence.
The aims of the pilot men’s social group outlined by Sainsbury, Gibson
and Moniz-Cook (1996) and considered here were devised by staff at a
memory clinic consisting of a memory nurse and a psychologist. Plans were
made to achieve the following aims:
• to increase socialisation and prevent or reduce withdrawal
• to provide an opportunity to meet peers with similar difficulties, in
non-threatening environments, thereby normalising their difficul-
ties and providing support
• to maintain memory by increasing activities
• to promote fun and enjoyment
• to ‘normalise’ carer relief or breaks and their perceptions about
dementia at an early stage (thus reducing fatalism and the thera-
peutic nihilism that can predominate in dementia care manage-
ment).

The pilot group

Men may be invited to join such groups because of their similarities in being at
an early stage of the dementia trajectory. In the pilot group described here, four
men were in the early stages of a dementia and another man had mild cognitive
impairments and functional difficulties which resulted in similar problems of
social withdrawal. The memory team decided to run the group in the
members’ own homes, with agreement from the men and their wives, to ease
any anxiety and normalise the activity. The group initially met once a week for
eight weeks. After this it was envisaged that they would continue for a further
three weeks, with the dementia team staff providing transport. Following this,
it was hoped that the group would become self-supporting, making use of
transport provided by volunteers.
The structure of the meetings was decided by the group during the first
sessions (facilitated by the staff ) and a list of ideas for activities was generated.
At the end of each meeting, the group decided where they would meet next
week and what they wanted to talk about or do. This led to suggestions of
outings to a local army transport museum and to ten-pin bowling.
180 Early Psychosocial Interventions in Dementia

Each session was summarised at the end and information was provided
about the next meeting. This was sent in the form of a personalised letter to
each member after each meeting, to aid memory and to maintain interest. Duff
and Peach (1994) evaluated mutual support groups for people who were in the
early stages of a dementia, and their participant feedback also highlighted the
fact that written invitations and reminders were useful practical strategies.

Evaluation of the pilot group

Before the first meeting, each man was asked to complete the Happiness, Con-
fidence and Affect self-rating scales questionnaire (adapted from Burns 1989).
In addition, they were asked to complete a Social Situation self-rating ques-
tionnaire, to examine feelings about recent social encounters. For all of these
measures, positive scores are reflected by higher ratings on the scale. Measures
were repeated at meeting four and again at meeting eight, the last of the formal
meetings. After each session, the facilitators rated each person on the scale
below:
• Attentiveness – the degree to which participants appeared interested
in the group.
• Responsiveness – the degree to which participants responded to
stimulus material, discussion or prompting.
• Spontaneity – the degree to which participants offered contributions
of their own.
• Involvement – the degree of non-verbal response to group activity.
• Interaction – the degree of interaction with other members of the
group.
• Anxiety – the degree of anxiety before and during the group
meeting.
A composite score for each person was then calculated.

Outcomes
Attendance was high, although one man missed four of the later sessions due
to ill health. Throughout the group meetings, a steady improvement in the
men’s involvement, general socialisation and ability to concentrate and cope
with this social situation were noted. The men remembered when the group
was taking place, the names of other participants and what they wanted to do
 Developing Group Support for Men with Mild Cognitive Difficulties 181

or talk about. This was particularly encouraging, given that four of the men
had an early dementia. Gerber et al. (1991) also reported similar findings.
However, improvement in this setting was not reflected to the same extent
in the men’s self-reports of how they felt about other social situations. The four
men who remained in the group reported only slight improvements in their
feelings about social encounters. This could be due to changes in their expecta-
tions of themselves, insensitivity in the questionnaire, or the short length of
time between ratings.
Self-ratings of their happiness and confidence showed no change, apart
from one person who reported increased happiness as the sessions progressed.
Mike Bender (personal communication) commented that six to eight weeks in
a group would not be long enough to show a change in confidence. The
self-reported affect scale showed a variety of results, with one person reporting
a decrease and another reporting an increase. However, all scores remained
high. There was one decrease on the affect scale. Given that deterioration
might be expected in some of these scales, it may be that the group helped to
prevent deterioration, but the period of time was very short.
The group seemed to provide a ‘normalising’ experience for many diffi-
culties that the men were experiencing, and insights into the everyday
problems these can cause. The extent to which this happened was encouraging,
given that this was not the primary aim of the group.

Lessons from the pilot

Looking back, the staff identified several aspects of the group that they felt
needed to change in any similar development. For instance, the men were ini-
tially uneasy with the informal nature of the group. Groups may benefit from a
more structured format at the beginning, gradually changing to an informal
structure as members become more familiar with each other. This has been
seen in examples where planned time-limited psycho-educational groups have
developed into long-term social support groups (Bender 2006). Furthermore,
comments from one group member, a few weeks into the group, revealed that
he remained isolated by his impression that he was the only person with
memory difficulties, since no one had talked about their memory problems.
The group structure could facilitate discussion of how particular memory diffi-
culties affect each person, with the aim of increasing awareness of their simi-
larities. As the group shifted to independence, a man who was more outgoing
than the others said he felt pressured to keep the conversation going within the
group. With the benefit of hindsight, it would have been helpful to have had
another person with a similar personality in the group to assist with this, if
possible.
182 Early Psychosocial Interventions in Dementia

At the end of the group, the facilitators were able to gradually withdraw
and arrangements were made for the group to be self-supporting. The staff felt
that continuing the group would be particularly important, in the light of
research which suggests that improvements may not be maintained once a
group has ended (Gerber et al. 1991). Other groups may benefit from repeat-
ing evaluations to examine the group process, through interviews with the
group members after the facilitators withdraw. This could enable insight into
whether groups and any of the improvements noted continue and what factors
may promote this. The capacity and willingness of the voluntary sector in
taking on transport and other organisational tasks also need to be considered
further and it should be included in planning such developments and service
design from the start.
Groups where participants are more closely matched for personality and
history might be possible. Evaluation could include measures of self-efficacy,
general anxiety and depression (to see if there is a beneficial effect on mood)
and perhaps focus more directly on the effects of group processes, on enhanc-
ing feelings of control and adaptive coping in early dementia. Choices about
evaluating dementia care are often limited by resources and have to consider a
range of communication and ethical issues (Murphy 2007), but they can none-
theless be empowering for participants and practitioners alike. Feminist
research methods are generally more familiar in social and health care research
settings. Evaluation of men’s services will need to consider the gender of the
facilitators as well as the researchers, and the ways in which men are able to
design or influence studies that draw on men’s perspectives.
Four more men’s groups have since been held. The latest group (held in
2007) put into practice changes based on some of the lessons learned. For
example, early attention was given to what the men would want from the
group sessions (see Box 12.2 for examples of their views). One theme that has
emerged from the five groups carried out so far is the importance of wives’
practical and emotional support (see Box 12.3). This has led us to think that
while the group may be termed a ‘men’s group’, it is a group of married men,
and thought would need to be given to how to involve men who are not living
with a female partner or who are not in heterosexual relationships (Manthorpe
and Price 2003).
Later groups have not been held in members’ own homes. This is because
of emergency transport difficulties and the problems these locations posed for
the families of group members over time. When men were not able to attend or
their families to ‘host’ the group, this resulted in lack of continuity and
problems with organisational rearrangements. The current resolution is that
the men’s groups are held in community centres, pubs, or a drop-in service.
Access to public transport and parking is essential.
 Developing Group Support for Men with Mild Cognitive Difficulties 183

Box 12.2 What would you like from

these group sessions?
William: To converse with people in the same situation.
Alan: When talking to others that don’t have memory problems it is
different to talking to people that are in the same boat as you (have
memory problems).
Thomas: We are all in the same boat, same problems.
Alan: You don’t realise that there are people out there with the same
problems. You are not on your own.

Box 12.3 The importance of wives

Thomas: Our wives have really good memories. We all find it helpful to
be able to talk about our problems and how people get round it.
William: There is an army of us with memory problems.
Alan: If you try to hide your memory problems, it makes your memory
worse. I leave notes for myself if I want to remember things; I write it on a
piece of paper and put it in my pocket. When you forget something, the
harder you try to remember it the worse your memory gets.
William: When you start worrying about it, it has a greater effect on you.
Thomas: I do not worry about memory, my wife is always on standby
for me.
Alan: I think we would all be lost without our wives, we do not realise
how much we rely on them. If my wife goes out I worry about what
happens if the phone rings. How will I remember the message? Usually
it is okay because I know the people and I know the answers to the
questions.
All: We have not been talking about anything specific but we have been
just talking. This is keeping our brains active.

The role of the facilitator has continued to be important but, when asked, the
men have so far not expressed a wish specifically for a male or female facilita-
tor. This proves easier in arranging staff attendance. Continuity of facilitator is
also helpful, but less important if the venue is a service setting, since the ‘sense
184 Early Psychosocial Interventions in Dementia

of stability’ provided by availability of other staff has been identified as impor-

tant for support groups (Mason et al. 2005).
The final lesson from the early groups is that a men’s group will only
continue if there is active support from and for their wives. They need to be re-
assured that the group is safe, that they will not be excluded from the service,
and that support will be available in the long-term.

Conclusion
We are beginning to be more aware of the importance of the social context in
which awareness of dementia is experienced and expressed (Clare et al. 2006,
p.142). Gender mediates such experiences, and support groups for men may be
services that are commissioned at local level. If this is so, thought will need to
be given about the staffing of such services and ways in which men who do not
want to participate are not excluded from other generic services. The experi-
ence of the pilot and other groups is that there are benefits, but that such
groups are resource intensive. We suggest that more thought needs to be given
to how men are welcomed into early dementia services and the images that
such services convey in terms of their publicity and illustrative activities. In this
way men may be more likely to see that their minority status may not be
reasons for self-exclusion and will be empowered to address behaviours, ex-
pectations and activities that are not meeting their needs.

Acknowledgements
We thank psychologists Louise Sainsbury, Gillian Gibson, Hannah Wilkinson,
Jas Harrison and Marcus Tredinnick at the Hull Memory Clinic for reporting
on their work as group facilitators and allowing us to make use of their insights
and experiences. We thank the people using the clinic’s services for their will-
ingness to contribute to this study.

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Chapter 13

Group Psycho-Educational
Intervention for
Family Carers
Rabih Chattat, Marie V. Gianelli
and Giancarlo Savorani

Overview
A psycho-educative group intervention for informal carers of people with
dementia was established in Bologna, Italy in 2000 by the Regione Emilia
Romagna, and was later extended to the community-based services managed
by the geriatric units of the University and of Galliera Hospitals in Genova.
This chapter describes the context of this family carer group programme in
Italy, the participants and programme outcomes. We conclude that, despite
the reported poor efficacy for time-limited carer support groups (Knight,
Lutzky and Macofsky-Urban 1993), there is a place for group-based
psycho-educational interventions for family carers, if these are grounded in
adequate theory and supported by empirical investigation which has used
outcome measures that fit the conceptual base of the intervention pro-
gramme. This study supports the Canadian randomised trial findings of
Hébert et al. (2003), where improving carer strategies within groups appeared
to minimise the potential for burden due to the development of behavioural
and psychological symptoms in dementia (BPSD). The chapter concludes
that early attention to carers’ misunderstanding of the changes in their rela-
tives and associated risks of isolation may be helpfully addressed by early at-
tention to their needs at the time that the person they are supporting is in the
early stages of dementia.
In Italy, as in many other parts of Europe, a high proportion of older
people with dementia are cared for at home by family or unpaid carers (Murray

186
 Group Psycho-Educational Intervention for Family Carers 187

and McDaid 2002). The stresses and strains associated with dementia care are
well documented and many studies show that carers are highly satisfied with
support groups (Brodaty, Green and Graham 2000), although nearly three
decades of research have at best produced equivocal findings on the effective-
ness of support groups for carers (Cooke et al. 2001; Knight et al. 1993; Pusey
and Richards 2001). Studies that do show effects on variables other than satis-
faction tend to have much more focused programmes than time-limited
support groups, involving both the person with dementia and carer and with
longer term flexible availability of a professional to provide support (Brodaty,
Green and Koschera 2003). It is not clear whether poor efficacy is due to inad-
equate measurement or inadequate programmes, or both as is highlighted in
an article by Lavoie (1995) entitled: ‘Support Groups for Informal Carers
Don’t Work! Refocus the Groups or the Evaluations?’
Often support group interventions are not explicitly theory driven, results
generated are apparently in conflict with one another (see Charlesworth 2001)
and even in studies that have a theoretical rationale there can be an unclear re-
lationship between theoretical frameworks and the impact of the interventions
that are used. The consequence for service providers and policymakers is a dif-
ficulty in translating significant research findings into viable programmes and
services at a local level (Coon, Gallagher-Thompson and Thompson, 2003a).
One way of improving this situation is to focus not on improving research
methodology but on how to increase the impact of intervention (Charlesworth
2001) since there have been significant improvements in efficacy of
psychosocial intervention over the past 20 years (Brodaty et al. 2003).
Those who run support groups have little doubt that they assist family
carers and the fact that people continue to attend could be taken as a marker of
effectiveness. Also, the methodological evolution of research and clinical carer
support groups that was highlighted by Brodaty et al. (2003) has begun to
demonstrate movement in clinical outcomes. For example, a randomised con-
trolled trial of a psycho-educational support group intervention involving 158
family carers showed significant effects on participant reaction to behavioural
problems in their relative and the frequency of these problems also decreased
(Hébert et al. 2003). In this study the experimental group received a theory
driven cognitive behavioural group intervention lasting two hours for 15
weeks, based on the Lazarus and Folkman (1984) transactional theory of stress
and coping, whilst the control group received traditional group support.
The stress–coping/adaptation theory base used in the study of Hébert et
al. (2003) has dominated the family carer research over many years where typi-
cally measures of perceived stress and coping are used as outcomes. Other the-
oretical frameworks include psychodynamic approaches and a variety of social
learning theories, typically including measures of self-efficacy and self-esteem
188 Early Psychosocial Interventions in Dementia

as outcomes. Theory selection has been influential in deciding upon methods

of intervention and the way to achieve desired outcomes and has also influ-
enced choices of outcome measures (Schulz and Williamson 1997). However,
ongoing investigations into dementia care continue to uncover the multidi-
mensional nature of the caregiving process suggesting that either new models
or building flexibility into existing ones to involve more contextually tailored
outcome measures are the only way of improving our understanding of today’s
caregiving as a complex, dynamic process (Coon, Ory and Schulz 2003b). An
example of how existing models may be developed is seen in the previously
described Canadian study where the process of the intervention as well as the
content was taken into account (Lévesque et al. 2002).
In Brescia, Italy the effectiveness of a psycho-educational group for family
carers has been reported (Magni et al. 1995; Nobili et al. 2004; Zanetti et al.
1998a), but until recently family carer support was not a nationwide priority.
In 2000, a Regional Health System Act affecting the Emilia Romagna region
of Italy stated that interventions for carers were to be an essential part of the
programme for developing services and intervention protocols for people with
dementia. In accordance with this Act, and in collaboration with the local as-
sociations of professional and family carers of people with dementia, we devel-
oped a group psycho-educational intervention for family carers in Bologna. In
this chapter we describe this intervention and present some of the outcomes
achieved.

Background and rationale to programme

development
Bologna, Italy where the programme was developed, was somewhat unusual
for many southern European countries, including Italy, in that it comprised
most of the features typical of large urban areas. There was a wide range of
social backgrounds, few extended family groups, smaller sized nuclear
families, a large number of dual working/income families and high divorce or
separation rates, resulting in a reduction of family members who were available
and willing to assist older relatives and an increasing number of non-EU
citizens (usually women) acting as ‘badanti’ – paid care workers. Yet caregiving
for people with dementia largely remained a ‘family affair’ (Vernooij-Dassen et
al. 2005) mainly due to:
• the high degree of stigma attached to the condition, which still
remains a barrier to using services
• low levels of recognition of the help that services can provide
 Group Psycho-Educational Intervention for Family Carers 189

• the lack of familiarity with self-help groups and group therapies in

general.
The majority of family carers in Bologna conformed to the documented litera-
ture (Senesi et al. 1999). They were often women who were ‘hidden patients’
(Coon et al. 2003a), providing dementia care over long periods of time, report-
ing more physical and mental health problems, lack of sleep, additional em-
ployment complications, greater family conflict and leisure time constraints,
higher use of psychotropic medications with more compromised immune
systems compared to other carers or non-caregiving counterparts (see Ory et al.
1999; Schulz et al. 1995; Zarit et al. 1998).
Among the methods reported as most effective for translating theory into
practice, we chose an approach based primarily upon knowledge and skills
training. The importance of knowledge and its role as a moderator in stressful
events was highlighted some decades previously by Lazarus and Folkman
(1984) in their ‘appraisal’ concept; and by Paykel (1983) who compared the
impacts of known, as opposed to unknown, events affecting coping strategies.
In a psychiatric context, a ‘psycho-educational’ family caregiving model was
proposed by Liberman (1987), who contended that caring skills and efficacy
could be improved through knowledge and skills training.
We followed a model of carer distress that involves addressing primary
and secondary strains, the latter referring to role change and inner conflicts,
employing the three-step intervention recommended by Zarit and Edwards
(1999):
1. Information strategy, i.e. education about dementia and its progression;
impact of the disease upon individuals and their families; difficulties
of caring over long periods; and resource availability.
2. Management of stressful situations surrounding the interpersonal rela-
tionship and emotional problems.
These two steps are thought to help carers feel more able to manage such situa-
tions and enhance their sense of control:
3. Practical and emotional support, which needs to be long-lasting, since
this is what allows carers to feel safer over the whole course of the
disease.

The programme
The educational programme was structured into ten weekly sessions of 90
minutes each. Every session addressed a main theme concerning one aspect of
dementia. During the first session, led by a psychologist, the members were
190 Early Psychosocial Interventions in Dementia

asked to talk about their situations and difficulties and also about their first
contact with the disease, from the first symptoms up to the diagnosis and the
impact of the dementia upon their well-being. The aim of this first session was
to enhance socialisation and exchange of experiences not only between carers
and the group leader, but also between carers themselves. During the follow-
ing three meetings a geriatrician discussed some clinical aspects of dementia
such as epidemiology, risk factors, types of dementia, disease course and dif-
ferent types of symptoms. Three more sessions, led by the psychologist, were
dedicated to discussing relationships between patients and carers, difficulties
related to coping, orientation and communication with their relatives, factors
involved in carer distress and some of the strategies that can be used to manage
symptoms, behavioural problems and stress. The remaining three sessions were
led in turn by a nurse, an expert in the legal and ethical problems of dementia,
and a social worker who explained the services available in the local area. At
the start of each session the leader discussed the theme of the meeting for 30
minutes and the remaining time was spent by carers discussing their own
questions or comments.
At the end of the course carers were offered the opportunity of taking part
in a further support group. This was held monthly by a psychologist with the
aim of maintaining contact, facilitating expression of emotions and support-
ing carers over the whole course of the disease. Sessions of individual counsel-
ling were also available at this stage, aimed at enhancing carer support and
expression.

Participants and outcome

Carers were recruited in collaboration with the Association for Research and
Assistance in Dementia (ARAD), the Health Agency of Bologna Nord (a local
agency of the national health system) and the geriatrics unit of Galliera Hospi-
tals in Genova. Information about the programme and invitations to carers to
participate were given out through a newsletter and in a public meeting.
In Bologna the first group was run in autumn 2001, and by 2003 a further
three groups with a total of 46 participants were completed. In Genova the
programme was initiated in 2004 and is ongoing. The data discussed in this
chapter refer to Bologna only.
The first step, i.e. the educational and training strategy, was developed
with groups of 10 to 12 carers who gave their written consent to take part. All
were primary carers of people affected by dementia diagnosed by geriatricians
and were living in the community. Of the 46 participants, 16 were male and 30
were female. Their mean age was 57.5 years (+ 11.00, range 30 to 82 years).
All had directly assisted their relatives or were involved in their care on a daily
 Group Psycho-Educational Intervention for Family Carers 191

basis. Twenty-six lived with the person with dementia while 20 lived close by
and were involved in daily caregiving. Thirty participants were sons or daugh-
ters while 16 were spouses. This profile may reflect the difficulty for spouses,
particularly if older themselves, to participate in this type of programme, and
the consequent tendency to delegate the responsibility of interacting with the
external world to sons or daughters. Just over half, 54.3 per cent, had eight
years schooling, and just under half, 45.7 per cent, had 13 years or more.
About half of the carers were in paid employment (47%) with the remaining
(53%) retired. Most were caring for female relatives (female n = 33; male n =
13), with an average age of 80.17 years (± 7.30 years, range 60 to 93 years).
The average length of time that their relative had had a dementia was 4.18
years (± 2.88 years), so this was a group of relatives with a relevant experience
of dementia caregiving.
Before and after the groups, participants were assessed using measures
listed below, in order to tap the framework described above, i.e. the interaction
between subjective factors, coping and aspects of the disease in determining
stress and well-being in carers. While disease symptoms, together with
socio-demographic data, can be seen as primary stress factors, coping strate-
gies of the carer may mediate the impact.

Measures
• The Mini Mental State Examination (MMSE) for cognitive status
of care recipients (Folstein, Folstein and McHugh 1975).
• The Neuropsychiatric Inventory (NPI, Cummings et al. 1994) is a
structured interview with carers, to assess the psychological and
behavioural symptoms of patients. It consists of 11 sets of neuro-
psychiatric symptoms in dementia which are rated on a five-point
Likert scale for frequency (how often the symptom occurs),
severity (how troublesome the symptom is for the person with
dementia) and the product of this, i.e. frequency multiplied by
severity (the symptom level of challenge). The NPI also has a
four-point Likert rating of the carers’ experience of distress associ-
ated with the symptoms.
• The Caregiver Burden Inventory (CBI, Novak and Guest 1989) is
a 24-item scale measured on a five-point Likert scale to assess
dementia-related burden on five domains of burden in family
carers. It has five subscales:
192 Early Psychosocial Interventions in Dementia

° physical burden: how much physical assistance is needed to

support the relative and its impact on the carer’s own physical
health

° time-dependence burden: how much time is needed to

support the care recipient

° social burden: the effect on the carer’s social life

° emotional burden: the emotional impact experienced by the carer
° developmental burden: the change in their own life due to the
caregiving role.

• The Coping Orientations to Problems Experienced (COPE), a

60-item, five-factor self-report scale validated for the Italian popu-
lation (Carver, Scheier and Weintraub 1989; Sica et al. 1997) for
coping strategies. It measures the following coping strategies:
social support, problem solving, avoidance (of emotional involve-
ment), positive attitude and religious coping.
• Socio-demographic data such as sex, age, relationship, working
status, onset and duration of disease were also recorded.

Results
As seen in Table 13.1, significant improvement in carer reports of neuropsychi-
atric and behavioural symptoms and in coping through social support was
found. Thus, carers reported lower frequency and severity of symptoms and to
a lesser extent their perceptions of stress associated with behavioural symptoms
were also reduced. Their emotional relief and seeking support of others also
showed a significant change, probably confirming the utility of group psycho-
educative interventions in satisfying some of these needs. The other domain
where significant change was observed was on the problem-oriented subscale
of COPE. This assesses activities and plans utilised to face problems. Here
reduction in the use of problem-oriented coping was noted, suggesting that
some carers became slightly over-vigilant in their search for methods to adjust
to dementia. Thus it appears that the intervention offers carers more help on
some aspects of coping such as social support (which also targets informa-
tion-seeking behaviour) but not on others.
The most important inferences from the data indicate that a psycho-
educational intervention, such as that developed in this programme, can help
carers to better understand the manifestations of dementia and the different
types of symptoms and can moderate reported BPSD probably through an
improved ability to understand symptoms and changed attributions of their
causes.
 Group Psycho-Educational Intervention for Family Carers 193

Table 13.1 Change over time on relevant outcome measures

Measure Baseline Post-group P value
Mean (sd) Mean (sd)
Person with dementia – cognition MMSE 16.81 17.89 NS*
(±6.30) (±5.57)
Carer report – frequency of NPI 19.38 14.05 0.006
behaviour symptoms Frequency (±7.07) (±5.65)
Carer report – severity of NPI 12.05 8.15 0.0004
behavioural symptoms Severity (±7.15) (±4.73)
Level of behavioural challenge NPIF 27.27 17.83 0.0004
F×S (±8.48) (± 3.53)
Carer appraisal/distress NPI 17.83 14.50 0.067
Stress (±3.53) (±3.81)
Carer – emotional burden CBI – emotional 3.22 2.0 0.081
burden (±4.11) (±2.16)
Carer coping using social COPE – social 29.94 27.76 0.030
support support (±6.95) (±6.36)
Coping using problem-solving COPE – 32.27 31.36 0.051
strategies problem-solving (±6.28) (±6.40)

Note NS = Not Statistically significant

One of the most difficult problems that carers have to deal with is the sense of
loss and loneliness they experience. Increased coping through social support
suggests that the sessions offered carers the opportunity to meet these personal
needs, through on the one hand access of information about the disease and on
the other sharing their emotional burden with others in similar circumstances.
In the second part of the analysis we bring together some of the factors
related to socio-demographic data and aspects of the disease associated with
carer distress. The aim is to outline the role of different variables in moderating
burden. Statistical analysis, application of the one-way analysis of variance
(ANOVA) model, gave the following results:
1. Carers with higher educational levels were more likely to actively
search for social support, use problem-solving strategies, make
greater use of information-seeking strategies and accept support
from others more readily. Such strategies represent more adaptive
methods in coping with the situation. They reported less time
dependence (F = 2.97; p = 0.047) and physical (F = 4.54; p =
0.009) burden on the CBI. Also coping strategies differ in relation
to educational level, with participants with higher levels being more
likely to take advantage of social support (F = 4.84; p = 0.006).
2. Carers in paid employment experienced less burden (particularly in
the categories of developmental (F = 14.85; p = 0), physical (F =
13.83; p = 0) and emotional (F = 9.96; p = 0.003) burden.
194 Early Psychosocial Interventions in Dementia

3. The type of relationship between the carer and the person with
dementia is important: spouses, when compared with sons or
daughters, showed higher levels of developmental (F = 10.67; p =
0.002), physical (F = 11.73; p = 0.001) and emotional (F = 11.45;
p = 0.001) burden.
Eighty per cent of carers who had attended the programme took part in
monthly support groups and from time to time also accessed individual coun-
selling. We have now undertaken a follow-up assessment aimed at understand-
ing the impact of three years of educational and support programmes for
carers. Although the data set is not complete, some of the inferences drawn
from the follow-up interviews help in understanding the role of such interven-
tions. When relatives were asked to express their opinions as to the usefulness
of the intervention, the most frequent responses were:
1. ‘It helped us to reduce the feeling of being alone with our problem.’
2. ‘It helped us to be in a situation where others understand what it
means to have a parent or spouse suffering from this kind of disease.’
3. ‘After following the programme we can really express what is
happening in our lives without fear of stigma, and we feel less need
to deny or minimise.’
4. ‘It offered the possibility of being constantly in contact with
someone who could help us deal with our difficulties.’
5. ‘It offered the possibility of developing new relationships with other
people.’
An important theme that emerges from these responses is that carers express
feelings of loneliness and isolation with a strong need for continuity of care
and support to counterbalance the sense of abandonment by others, especially
by the person with dementia himself or herself.

Conclusion
Family carer burden is less related to the stage of the dementia – particularly
cognitive and functional status – than it is to carer status and the caregiving
process (Montgomery and Kosloski 1999). This confirms much of current lit-
erature suggesting that the contributing factors to carer burden are less about
the disease itself and more about other subjective factors, such as when the
disease started, how long it has lasted, the age of carer and person with
dementia, their relationship, the carer’s occupational status and educational
 Group Psycho-Educational Intervention for Family Carers 195

level, the quality of their prior relationship, and the potential for ‘carer gain’,
i.e. the positive aspects of caring, all of which can moderate stress (Dunkin and
Anderson-Hanley 1998; Ford et al. 1997; Thommesen et al. 2002; Zanetti et al.
1998b).
The frequency of behavioural and psychological symptoms (NPI-F) is an
important aspect of carer burden and this study confirms that group interven-
tion can moderate these, suggesting that this model of intervention has the po-
tential to impact, at least in the short term, on the reported behavioural and
psychological symptoms of people with dementia (BPSD). Whilst our study
lacked a control condition, it confirms the findings of the randomised con-
trolled study of Hébert et al. (2003) where reduced BPSD following a similar
theoretical base to that of our study in Bologna was also noted.
Although our results are modest, one positive aspect of the carer
programme in Bologna is that it reflects a starting point for developing more
well defined and long-term psychosocial interventions which can follow the
changing needs of families through their career in dementia (Montgomery and
Kosloski 1999). In the follow-up interviews, most carers stressed the impor-
tance of being able to interact with other people in similar situations, and of
having the opportunity to express their feelings and emotions. This was an im-
portant adjunct to the information they received. We do not report measures of
distress (anxiety and depression) although these were taken. The group inter-
vention had little impact on carer distress but this is not surprising as, accord-
ing to the theory used in this study, moderating carer mood would require a
more sustained and individualised psychosocial intervention (Brodaty et al.
2003). The opportunity for continued group support and individual counsel-
ling has, we suggest, the potential to moderate carer mood and if the
programme is offered at the start of the family journey (Caron, Pattee and
Otteson 2000) there is scope to prevent breakdown of care at home, as is dem-
onstrated in the New York studies of individualised psychosocial intervention
in family carers (Mittelman et al. 2004).
One source of optimism for this group intervention in Italy is that it is set
within a regional policy that aspires to improve services for people with
dementia and their carers, thus allowing scope for adjusting international
research in psychosocial intervention in dementia and implementing this
within local communities in Italy.
196 Early Psychosocial Interventions in Dementia

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Further Reading and Related References

Gianelli, M.V., Senesi, B., Molinari, L. and Polleri, A. (2000) ‘How heavily does the burden of
patients’ cognitive impairment emotionally affect their caregivers?’ Paper presented at
conference on ‘Non-Alzheimer Cognitive Impairment’, Newcastle-upon-Tyne, 4–7 April.
 PART IV

Developing
Evidence-based
Psychosocial
Support Services
Chapter 14

The Meeting Centres

Support Programme
Rose-Marie Dröes, Franka Meiland,
Jacomine de Lange, Myrra Vernooij-Dassen
and Willem van Tilburg

Overview
Over the past 15 years many types of support have been developed for people
with dementia and their carers. This has ranged from respite care, discussion
groups and informative meetings to different educational materials such as
books, information brochures and television programmes. The main drawback
of the current support offered is that it is often fragmented. To tackle these dif-
ficulties, a number of care and welfare institutions in Amsterdam combined
their support and expertise in the Meeting Centres Model, which began in
1993. The initiative was led by the Department of Psychiatry at the Vrije
Universiteit (VU) medical centre and the Valerius Foundation, a Dutch founda-
tion that encourages innovative activities which link care and welfare for
people with mental and nervous diseases. Because of the positive experiences
and study results, the Meeting Centres Model has been disseminated to eight
other regions and 17 cities in the Netherlands. In this chapter the content of
the Meeting Centres Support Programme is discussed, together with the
theory it was based on, the research that has been conducted on it in the last ten
years, and the application in daily practice. The chapter ends with some con-
cluding remarks about the strengths and potential limitations of the support
programme, and some factors that must be taken into account in establishing a
meeting centre.
The Meeting Centres Support Programme integrated various support ac-
tivities, which have already been proven effective by research and practice, for

201
202 Early Psychosocial Interventions in Dementia

people with dementia and their carers (Cuijpers 1992; Dröes 1991; Dröes and
van Tilburg 1996; Finnema et al. 2000a; De Lange et al. 1999;
Vernooij-Dassen 1993). Carers attend informative meetings and discussion
groups, and access respite care and practical help to arrange care at home and,
if necessary, placement in a nursing home. People with dementia (a maximum
of 15 per centre) utilise social clubs in the community centre, or centres for
older people, where they participate in a variety of creative and recreational ac-
tivities. Furthermore, carers and people with dementia use a weekly counsel-
ling session and a monthly meeting for all participants. A collaborative system
records how the regional care and welfare institutions participate in the
support programme. The small-scale, integrated and intensive nature of the
support, which happens close to home, fosters a trusting relationship with the
meeting centre staff. This makes it easier for carers to accept help and share the
caregiving with others.

Theoretical background
The support programme was based mainly on the Adaptation-Coping Model
(Dröes 1991; Dröes et al. 2000; Finnema et al. 2000b) which was derived from
the coping theory of Lazarus and Folkman (1984) and the crises model of
Moos and Tsu (1977). In the Adaptation-Coping Model behavioural problems
in people with dementia were partly explained as reactions or (in)adequate
ways of coping (naturally partly due to the dementia) with the stress caused by
a number of general adaptive tasks. For example, the person may have experi-
enced problems with:
• dealing with their disabilities
• preserving an emotional balance
• maintaining a positive self-image
• preparing for an uncertain future
• developing and maintaining social relationships
• dealing with the institutional environment and treatment proce-
dures
• developing an adequate relationship with staff.
The programme offered people with dementia and their carers emotional
support in the process of accepting the disease, in dealing with the difficult
times they may face, and in their changing relationship. It also aimed to
decrease feelings of stress and increase feelings of self-esteem and competence
 The Meeting Centres Support Programme 203

in both the person with dementia and their carer, by influencing their appraisal
of their situation and their coping processes (Dröes 1996). The older people
with dementia were also assisted in adapting to other problems they experi-
enced because of their disabilities. The general goals of the support
programme were:
• to inform carers about dementia and coping strategies, so that they
learned to cope with the behavioural changes in the person with
dementia
• to let the carer and the person with dementia experience emotional
support from other people who are in the same situation
• to increase the social network of the carer and the person with
dementia, and thereby increase the support of the social environ-
ment
• to give the carer some respite to reduce the burden of care
• to assist and support people with dementia in adapting to and
coping with their own disabilities and deterioration, with the
ultimate goal of improving the quality of their life.

Recruitment and inclusion criteria

People with mild to moderate dementia and their carers who participated in
the programme were recruited via local newspapers, posters, (e.g. in general
practitioners’ (GPs’) surgeries and pharmacies, and brochures. Selection took
place on the basis of the diagnosis ‘dementia syndrome’ and the level of
severity of the dementia. The diagnosis was always made by a medical doctor,
i.e. a general practitioner, a doctor at the local psychiatric service or by a psy-
chiatrist or neurologist in, for example, a memory clinic. A criterion for the
carer was that he or she should be motivated to participate in the support
programme.

Research
Research by the VU medical centre between 1994 and 1996 (in four meeting
centres in the Amsterdam area; Dröes 1996; Dröes et al. 2000) and between
2000 and 2003 (in five other regions in the Netherlands; Dröes et al. 2003b)
demonstrated that the combined support in meeting centres had additional
value when compared with standard day care in nursing homes. People with
dementia who utilised the Meeting Centres Support Programme over a longer
period of time (seven months) had less behavioural and mood problems (less
204 Early Psychosocial Interventions in Dementia

antisocial behaviour, inactivity and depressed behaviour in particular; delayed

nursing home admission) than people who visited ordinary day care centres.
Also, the strength of the carers was greater (fewer experienced burden, keeping
up the care for a longer period of time and at a better level; expanding their
social networks) compared to carers who visited ordinary day care. The second
study also demonstrated that lone carers who participated in the Meeting
Centres Support Programme developed fewer psychological and psychoso-
matic complaints. The costs of the integrated support were no higher than the
costs of ordinary day care in nursing homes, which meant that a larger effect
was achieved at the same cost.
With regard to the people with dementia who participated in the support
programme it was found that the majority had four or more neuropsychiatric
symptoms (as measured by the Neuropsychiatric Inventory, NPI; Cummings et
al. 1994). Over half of the participating carers had psychological and/or psy-
chosomatic complaints (as measured by the General Health Questionnaire;
Goldberg and Hillier 1979).
People with dementia as well as their carers were very satisfied with the
support and some of them (half of the people with dementia and one-third of
the carers) viewed the people they met at the meeting centre as new friends.
Dissatisfaction regarding the meeting centres (e.g. the furnishings) and the
support programme itself (e.g. frequency of programme elements) was
reported only by a small minority.
The effects of the support programme in the first study in Amsterdam
(1994–1996) were largely similar to the effects found in the second imple-
mentation study (2000–2003) in six other regions of the Netherlands where
new meeting centres were started. A quasi-experimental pre- and post-test
control group design with two matched groups was applied to study the
specific effect of the experimental programme. The matching took place on
severity of dementia, the care needs of the person with dementia, and feelings
of competence in the caregiver. In both studies the same ordinary day care
control group was used. Measurement took place before the intervention (at
baseline) and after seven months.

Application
The meeting centres offered practical, emotional, and social support for
people with dementia and their carers. In this section we describe how this was
achieved.
 The Meeting Centres Support Programme 205

Activities for the person with dementia

In the social club, which opened on Mondays, Wednesdays and Fridays from
10 am until 4 pm, the person with dementia participated in several activities
such as domestic activities (guided shopping or washing dishes), and creative
activities and recreational activities, such as listening to music and reading the
newspaper. In addition they could participate in psychomotor therapy three
times a week (Dröes 1997a, 1997b; Dröes and Van Tilburg 1996) and could
make use of the counselling hour once a week (see Figure 14.1). In the social
club there were always two professional helpers present (see below).
Examples of the general care strategies used for the person with dementia
were: reactivation, resocialisation and improving their affective functioning.
Of course, combinations of strategies were also possible. Several
emotion-oriented approaches were used, such as validation, reminiscence and
reality orientation assistance.

Activities for family carers

Support strategies for caregivers varied from giving information and practical
help by, for example, informative meetings and case management, to offering
emotional support through discussion groups, and increasing their social
network by encouraging participation in social and cultural activities. The in-
formative meetings (in total eight to ten lectures about dementia and handling
of behavioural problems) were organised once a fortnight. The discussion
group also came together once a fortnight. Carers participated in it as long as
they felt the need to do so. Both the informative meetings and the discussion
groups lasted about two hours per meeting. The programme co-ordinator or-
ganised both groups. For the informative meetings professional speakers (e.g. a
psychologist, a neurologist, a social worker, etc.) were invited to talk about
specific themes. The counselling hour was held weekly by the programme
co-ordinator at a fixed time. Participants visited the centre or contacted the
centre by telephone. Finally, some activities were organised for the carer and
the person with dementia together, such as the monthly centre meeting that
was organised to adapt the programme to the needs of the participating group
at that time, and recreational activities (see Figure 14.1). The staff of the
programme worked together with psychiatric and psychogeriatric ambulant
services, including community nursing and home care, and with the general
practitioner for consultation.
206 Early Psychosocial Interventions in Dementia

Meeting Centres Support Programme

For the carer Goal

• Informative meetings • Education

• Discussion group • Emotional and social support

For the people with dementia

• Social club • Assistance and support in coping with their

own deterioration

• Psychomotor therapy

For both

• Counselling hour • Individual support and advice

• Case management • Practical support

• Monthly meeting where staff and • Adapting the programme to the needs of the
participants meet participating group at that time

• Optimising communication between staff

and participants

• Recreational activities • Expansion of social network

Figure 14.1 The programme and its goals

Case example – Walter and Dorothy

During a visit to the GP Dorothy complained about being nervous all the
time and having frequent headaches. The GP felt that she had become
overburdened due to caring for her husband, whom she loved dearly
and had looked after since his diagnosis of dementia. A recent added
strain for both Walter and Dorothy was the deterioration of his eyesight
over the past year. The GP therefore advised Dorothy to get in touch with
the Meeting Centres Support Programme. It was thought that they could
both receive support at the same time, since it was unlikely that either
Walter or Dorothy would easily agree to part with the other during the
day so that Dorothy could have traditional ‘respite’ such as day care.
At the meeting centre it was suggested that Walter participated in
the social club three days a week, whilst Dorothy could join the carer
programme that was organised one afternoon a week and receive both
emotional support and information on how to cope with the daily
problems she encountered in caring for her husband. As an add-on, if
they both liked the meeting centre, Dorothy would also be able to have
some respite on the other two days that her husband attended the
centre.
 The Meeting Centres Support Programme 207

Initially Walter and Dorothy had a period of getting to know what

was available. Dorothy reported that she liked the small size, the relaxed
atmosphere and the individual attention that the few members of staff
appeared to give to the participants. She particularly felt that the
opportunity to listen to classical music would be of interest to her
husband, as his vision was deteriorating. The first time that she
participated in the discussion group with other family members, she
reported feeling a bit out of her depth, but was soon able to explain her
experience of how she suffered from losing her husband bit by bit.
Through this opportunity to describe what it felt like for her, she was
able to experience the relief of shared support. During one psycho-
educational meeting, it dawned on her that the somatic complaints that
she sometimes experienced were connected with the sorrow and the fear
of losing her husband.
When Walter attended the meeting centre without his wife, Dorothy
filled her time with cleaning the house and shopping. She initially
reported that she found it difficult to do things that were just for herself,
since she would think of her husband and feel guilty. However, when she
attended the meeting centre, she had the opportunity to have a cup of
coffee with others after the discussion group. Dorothy began to have
coffee with another woman of her own age who also had a husband with
dementia. Over time they gradually became friends. In the spring, when
the new activity agenda at the community centre had been announced,
they decided to do a course in flower arranging. They had great fun and
after every meeting they would have a cup of tea or coffee together at the
social club. Her husband was observed to beam with happiness when he
heard her cheerful voice, ‘She is still the best!’

Conclusion and implications for future

research
The ‘added value’ aspect of the Meeting Centres Model was that it combated
fragmentation by offering a broad and integrated support programme for
people with mild to moderate dementia, as well as for their carers, in an easily
accessible location (community centre and centre for the elderly), by a small
and permanent professional team (a programme co-ordinator, an activity ther-
apist and a nursing assistant). This rendered the service, especially in the early
stages of dementia (and for younger people with dementia), less threatening
than the standard day care offered in institutions such as nursing homes and
homes for the elderly in the Netherlands. As a result help was requested at an
earlier stage.
Research has shown that behavioural disorders of people with mild
to moderate dementia, overburdening of carers, and psychological and
208 Early Psychosocial Interventions in Dementia

psychosomatic complaints in lone carers could be partly prevented by partici-

pation in the Meeting Centres Support Programme.
To stimulate national implementation, the conditions of successful
practice were investigated by the Department of Psychiatry at the VU medical
centre in Amsterdam, in conjunction with the University Medical Centre St
Radboud in Nijmegen and the Trimbos Institute in Utrecht. This study
showed that implementation in other regions did not lead to major changes in
the programme design or execution, or in changes in the target group (people
with dementia and their carers). In other words, the Meeting Centres Support
Programme represented a well-defined facility bridging care and welfare. All
elements of the programme were offered in easily accessible locations by a
small professional staff and volunteers. With regard to the people with
dementia taking part, the majority of them showed behavioural and psycho-
logical symptoms, over half of the carers had psychological and/or
psychosomatic complaints.
Factors that helped and factors that hindered the implementation of the
Meeting Centres Support Programme in six regions of the Netherlands were
assessed on the basis of a theoretical model that was designed specifically for
this study. The model classified these facilitators and barriers at the micro-
(primary process), meso- (social context and organisation) and macro-levels
(structures, legislation) during three phases of the implementation process: the
preparation phase, the introduction phase and the continuation phase. A diver-
sity of facilitators and barriers were found for different phases of implementa-
tion. Factors that were important in all phases were: motivated people (key
figures, innovators, personnel); cooperation with other organisations (regard-
ing referrals, appropriateness of care, discharge, cooperation on parts of the
support programme such as discussion groups, informative meetings); a
proactive public relations strategy to recruit the target group (i.e. people with
mild to moderate dementia and carers in need of support); and the availability
of funds. With the growing numbers of older people in the coming decades,
this last factor will be increasingly important to safeguard the continuation of
this kind of support which links care and welfare.

Acknowledgements
Parts of this chapter were published previously in Dröes et al. (2002), Dröes et
al. (2003a) and Dröes, Meiland and van Tilburg (2006).
 The Meeting Centres Support Programme 209

References
Cuijpers, P. (1992) ‘De effecten van ondersteuningsgroepen voor verzorg(st)ers van dementerende
ouderen thuis: een literatuuroverzicht.’ [The effects of support groups for carers of dementing
elderly people at home: a literature review.] Tijdschrift voor Gerontologie en Geriatrie 23, 12–17.
Cummings, J.L., Mega, M., Gray, K., Rosenberg-Thompson, S., Carusi, D.A. and Gornbein, J. (1994)
‘The neuropsychiatric inventory: comprehensive assessment of psychopathology in dementia.’
Neurology 44, 2308–2314.
Dröes, R.M. (1991) ‘In beweging: over psychosociale hulpverlening aan demente ouderen.’ [In
movement: on psychosocial care for the demented elderly.] Nijkerk: Intro.
Dröes, R.M. (1996) ‘Amsterdamse ontmoetingscentra; een nieuwe vorm van ondersteuning voor
mensen met dementie en hun verzorgers.’ [Amsterdam meeting centres; a new form of support
for people with dementia and their carers.] Amsterdam: Thesis Publishers.
Dröes, R.M. (1997a) ‘Psychomotor Group Therapy for Demented Patients in the Nursing Home.’ In
B. Miesen and G. Jones (eds) Care-giving in Dementia. London: Routledge.
Dröes, R.M. (1997b) Beweeg met ons mee! Een activeringsprogramma in groepsverband [Let’s move together!
An activation programme for groups of people with dementia.] Utrecht: Elsevier/De
Tijdstroom.
Dröes, R.M. and van Tilburg, W. (1996) ‘Amélioration du comportement agressif par des activités
psychomotrices.’ [Improvement of aggressive behaviour by psychomotor activities.] L’Année
Gérontologique 10, 471–482.
Dröes, R.M., Breebaart, E., Ettema, T.P., van Tilburg, W. and Mellenbergh, G.J. (2000) ‘The effect of
integrated family support versus day care only on behavior and mood of patients with dementia.’
International Psychogeriatrics 12, 99–116.
Dröes, R.M., Breebaart, E., Ettema, T.P., Meiland, F.J.M., Mellenbergh, G.J. and van Tilburg, W.
(2002) ‘Effect of Meeting Centers Support Program on Persons with Dementia and Their
Carers.’ In S. Andrieu and J.P. Aquino (eds) Research and Practice in Alzheimer’s Disease: Family and
Professional Carers’ Findings Lead to Action. New York, NY: Springer.
Dröes, R.M., Meiland, F.J.M., de Lange, J., Vernooij-Dassen, M.J.F.J. and van Tilburg, W. (2003a)
‘The meeting centres support programme: an effective way of supporting people with dementia
who live at home and their carers.’ Dementia: The International Journal of Social Research and Practice
2, 426–432.
Dröes, R.M., Meiland, F.J.M., Schmitz, M.J., Vernooij-Dassen, M.J.F.J., et al. (2003b) Implementatie
Model Ontmoetingscentra; een onderzoek naar de voorwaarden voor succesvolle landelijke implementatie van
ontmoetingscentra voor mensen met dementie en hun verzorgers. Eindrapport. [Implementation Meeting
Centers Model; a study into the conditions of successful national implementation of meeting
centers for people with dementia and their carers. Final report.] Amsterdam: Department of
Psychiatry, VU Medical Center.
Dröes, R.M., Meiland, F.J.M. and van Tilburg, W. (2006) ‘The Meeting Centers Support Programme
Model for Persons with Dementia and Their Carers: Aims, Methods and Research.’ In B. Miesen
and G.M.M. Jones (eds) Care-Giving in Dementia: Research and Applications, Vol. 4. London:
Routledge.
Finnema, E.J., Dröes, R.M., Ribbe, M.W. and van Tilburg, W. (2000a) ‘The effects of emotion-
oriented approaches in the care for persons suffering from dementia: a review of the literature.’
International Journal of Geriatric Psychiatry 15, 141–161.
Finnema, E., Dröes, R.M., Ribbe, M. and van Tilburg, W. (2000b) ‘A review of psychosocial models
in psychogeriatrics: implications for care and research.’ Alzheimer Disease and Associated Disorders
14, 68–80.
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Psychological Medicine 9, 139–145.
De Lange, J., Dröes, R.M., Finnema, E. and van der Kooij, C.H. (1999) ‘Aansluiting bij de
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care for people with dementia.] Alzheimer Magazine 12, 16–19.
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Coping with Physical Illness. Oxford: Plenum.
Vernooij-Dassen, M.J.F.J. (1993) ‘Dementie en thuiszorg: een onderzoek naar determinanten van het
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[Dementia and home care: a study into the determinants of the feeling of competence of central
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210 Early Psychosocial Interventions in Dementia

Further reading and related references

Dröes, R.M., Boelens-Van der Knoop, E.J., Bos, J., Meihuizen, L., et al. (2006) ‘Quality of life in
dementia in perspective: an explorative study of variations in opinions among people with
dementia and their professional caregivers, and in literature.’ Dementia: The International Journal of
Social Research and Practice 5, 533–558.
Dröes, R.M., Meiland, F.J.M., Schmitz, M.J., Boerema, I., et al. (2004) ‘Variations in meeting centers
for people with dementia and their carers: results of a multi-centre implementation study.’
Archives of Geriatrics and Gerontology 9, 127–148.
Dröes, R.M., Meiland, F.J.M., Schmitz, M. and van Tilburg, W. (2004) ‘Effect of combined support
for people with dementia and carers versus regular day care on behaviour and mood of persons
with dementia: results from a multi-centre implementation study.’ International Journal of Geriatric
Psychiatry 19, 1–12.
Dröes, R.M., Meiland, F.J.M., Schmitz, M. and van Tilburg, W. (2006) ‘Effect of the meeting centres
support programme on informal carers of people with dementia: results from a multi-centre
study.’ Aging and Mental Health 10, 112–124.
Meiland, F.J.M., Dröes, R.M., de Lange, J. and Vernooij-Dassen, M.J.F.J. (2005) ‘Facilitators and
barriers in the implementation of the meeting centres model for people with dementia and their
carers.’ Health Policy 71, 243–253.
Chapter 15

Personalised Disease
Management for People
with Dementia
The Primary Carer Support Programme
Myrra Vernooij-Dassen, Maud Graff
and Marcel Olde Rikkert

Overview
This chapter describes an early support programme that is targeted at the
primary carer (usually a spouse or child) of the person with dementia living at
home. The programme is seen as an ‘early intervention’ in that it is a system-
atic, proactive approach directed at primary carers who provide support to
the person with dementia, but who often need support themselves
(Vernooij-Dassen and Dautzenberg 2003). It also follows a ‘disease manage-
ment’ care protocol, where systematic integrated care within available
resources (Ellrodt et al. 1997) aims to minimise the bio-psychosocial conse-
quences of the disease and its disclosure. Thus co-ordinated care is not simply a
reaction to a crisis, but is focused on the duality of the personal consequences
of the disease (dementia) alongside the ‘caregiving career’ (Aneshensel et al.
1995). The management of dementia requires practitioners from a variety of
disciplines to use a range of treatment and support methods with people with
dementia and also with their primary carers. These can sometimes include bio-
medical care (including the use of medication) but more often than not some
forms of psychosocial care such as active listening and emotional support is an
important requirement. The programme described in this chapter is set within
a disease management perspective, but focuses on psychosocial support for the

211
212 Early Psychosocial Interventions in Dementia

primary carer. First, the theoretical and practical background to the pro-
gramme and the evidence for it are summarised. Second, the programme in
practice is described and illustrated. Third, its strengths and potential limita-
tions are considered. Finally, we examine the potential for this programme to
be set within a broader disease management protocol, involving multi-
disciplinary staff in the support of people with dementia and their primary
carers.

Rationale
Background and evidence for the primary
carer support programme
A prerequisite of this programme is that practitioners who support people with
dementia need to accept that it is also their task to support primary carers.
General practitioners (GPs) may indeed accept that they need to address the
problems of primary carers of people with dementia (van Hout et al. 2000).
However, in practice, some studies suggest that in the absence of medical com-
plaints only a quarter are proactive in paying attention to primary carers
(Simon and Kendrich 2001). Even direct educational interventions that are
aimed at helping GPs to consider the needs of family carers may not always
result in changes in their actual behaviour (Downs et al. 2002). Often they may
want to do something to help families, but may not know what to do. There is
some evidence that GPs may only be prepared to engage in early detection of
dementia if there are early responsive management solutions available (IIiffe,
Wilcock and Haworth 2006). Other practitioners will also need the skills and
confidence to work with people at early stages and these are possessed by or
transferable to many levels:
Early diagnosis allows individual patients and their carers to be informed
and appropriate management instigated and so professionals need to be
equipped to help people over longer periods, starting with planning for the
future. Professionals will be expected to facilitate preliminary introduction
to appropriate agencies and support networks for both people with
dementia and their families since these can relieve the significant psycho-
logical distress that carers may experience. (Iliffe and Manthorpe 2004, p.5)
Several programmes have been developed to support primary carers of people
with dementia, such as respite or short break care (Gaugler et al. 2003),
telephone support (Goodman and Pynoos 1990) and psycho-educational
interventions (Herbert et al. 2003). The most effective of these uses an indi-
vidualised approach, in which interventions are tailored to the specific needs
of carers and the professionals (Acton and Kang 2001; Vernooij-Dassen et al.
 Personalised Disease Management for People with Dementia 213

2000, see Brodaty, Green and Koschera 2003 for a review). Dementia care is
one area of practice in any discipline where an individualised approach is
essential:
Change is the core issue in dementia care, with multiple pathways of change
that need to be understood at clinical and organisational levels. Practitio-
ners and people with dementia are engaged in managing emotional, social
and physical risks, making explicit risk management a potentially impor-
tant component of dementia care. (Iliffe et al. 2005, p.1)
One primary carer programme that uses a ‘disease management’ protocol is the
family support programme developed by Bengtson and Kuypers (1985). This
programme begins by systematically evaluating the concerns and problems ex-
perienced by the carer and then developing family-specific care plans, the
effects of which are then evaluated. The programme meets many of the princi-
ples of ‘disease management’ in that it provides a systematic and co-ordinated
approach to using available resources in order to improve the quality of care in
long-term conditions (see, for example, Vickrey et al. 2006). This systematic
framework for informing case or care management attempts to maximise avail-
able resources whilst at the same time providing the flexibility to develop plans
that are individualised in conjunction with the person with dementia and the
carer. This differentiates it from other more traditional forms of disease man-
agement, where the focus is on the disease and the patient rather than on the
person with the long-term condition and their carer (Vernooij-Dassen and
Moniz-Cook 2005). The ‘disease management’ programme described in this
chapter, the ‘primary carer support programme’, was derived from the family
support programme of Bengston and Kuypers (1985) in the USA.
We start this chapter with a brief outline of the theoretical underpinnings
of the programme, the adaptations that we made to the original family support
programme and the evidence base for this primary carer support programme.

Theoretical background and evidence

The theoretical basis for this programme lies within the problem-solving liter-
ature. Two basic theoretical positions from the social sciences have been
combined. First there is the symbolic interactionist perspective (Marshall
1986), which contends that people depend on and influence each other. Here
this is translated to mean that the person with dementia will inevitably influ-
ence the primary carer. This has a strong empirical basis (Burns and Rabins
2000) and there is further evidence that the more general social context may
also strongly influence the person with dementia (Opie, Rosewarne and
O’Connor 1999). The second theoretical perspective relates to the meaning
214 Early Psychosocial Interventions in Dementia

that a person may attribute to a particular situation. For example, a carer may
act upon his or her perception of a situation, and this perception may influence
the intervention used. Interventions with carers of people with dementia were
derived from the stress–appraisal–coping model of Pearlin and Schooler
(1978), and within this context there is some support for this second theoreti-
cal perspective. The primary carer support programme we developed therefore
focuses particularly on the meaning or perception attached to a situation by
the primary carer, with intervention targeted at altering this view if necessary.
The family support programme of Bengtson and Kuypers (1985) was
adapted and shortened to improve its use with primary carers of people with
dementia living at home. The programme can be used by professionals such as
GPs, home helps, district nurses, occupational therapists, and those working in
older people’s services and mental health services, all of whom help to address
the problems of carers looking after a person with dementia living at home.
The original programme was applied by trained and supervised home helps
and was effective in strengthening the sense of competence of female carers
living with people with dementia, and in delaying the admission of the person
with dementia to residential or nursing home care (Vernooij-Dassen et al.
2000).

Description and application of the primary

carer support programme
The programme aims to strengthen the primary carer’s sense of competence by
reducing the negative consequences of caring; to strengthen carer satisfaction
with his or her own performance as a carer; and to strengthen carer satisfaction
with the person receiving care. ‘Sense of competence’ refers to the capacity of
the primary carer to feel that they are supporting the person with dementia
(Vernooij-Dassen, Felling and Persoon 1996). Sense of competence represents
three domains of systematic evaluation of carer need, which then allows the
development of family-specific care planning. Box 15.1 shows the three
domains and the types of questions that are asked of carers. It also illustrates
some of the strategies that were used by home helps to address these problems,
using available health and social care resources, during the development and
evaluation of the programme. Problem or ‘need’ identification allows targeting
on the ‘real life’ concerns of the carer and helps prevent crises. It offers sugges-
tions for both emotional and practical support in early and also later stages of
caregiving.
 Personalised Disease Management for People with Dementia 215

Box 15.1 Questions for carers and potential strategies

Areas of carer need: Short Sense of Competence Questionnaire
(SSCQ; Vernooij-Dassen et al. 1999)
Domain 1: Consequences of caring for the personal life of the carer
· I feel that the present situation with my…does not allow me
as much privacy as I’d like.
· I feel stressed between trying to give to my…as well as deal
with other family responsibilities, job, etc.
Strategy for management: organise additional professional support
(see case example Eleanor)
Domain 2: Satisfaction with one’s own performance as a carer
· I feel strained in my interaction with my…
· I wish that my…and I had a better relationship.
Strategy for management: open a dialogue regarding expectations,
resources and conflicts (see case example Hannah)
Domain 3: Satisfaction with the person with dementia as a recipient of
care
· I feel that my…behaves the way s/he does to have her/his
own way.
· I feel that my…behaves the way s/he does to annoy me.
· I feel that my… tries to manipulate me.
Strategy for management: clarify the relationship between the person’s
behaviour and the dementia syndrome (see case example Ingrid)

Application of the programme

Application involves training support workers (in this case home helps) within
a framework of real people and situations that are found in daily practice. The
practitioners use systematic evaluation, including the Sense of Competence
checklist (Vernooij-Dassen et al. 1999) to identify a problem or area of need
and use problem-solving strategies. Problem identification, decision-making
strategies and solutions or the best way forward are essentially collaborative
and reached in consultation with the primary carer. However, within this col-
laborative framework the practitioner is also strongly influenced by the theo-
retical framework of the programme (i.e. the potential for cognitive/appraisal
216 Early Psychosocial Interventions in Dementia

restructuring) and the availability of local resources for support, which are
included in the problem-solving consultation. One example of the former
involves assisting the carer to see if the burden of caring can be shared, whilst
an example of the latter involves providing knowledge and opportunity for the
carer to access the right help for a particular problem. Goals within each inter-
vention should also be broken down into small entities, which should be clear
and achievable. GPs can be asked, for example, to assist the carer to get a good
night’s sleep, or occupational therapists can be asked about disability and
mobility aids and so forth. Our experience suggests that even when only small
and limited goals are achieved, an unbearable situation may change into one
where there is still some hope and pleasure in life. Thus, the primary carer can
be guided in specific situations and both emotional and practical support can
be identified as needs to be met. Emotional support includes offering an op-
portunity to express and discuss feelings and problems. Practical support can
be provided by finding feasible solutions to problems and by providing help.
A final aim of the primary carer support programme is to empower carers
who can then realise their wishes and avoid things that they do not wish to do.
Through this process of mobilising carers’ strengths, it is anticipated that ex-
haustion or burnout may be prevented.

Case studies
The cases that follow illustrate how carers’ needs may be met using the
programme described.

Case example – Eleanor

Eleanor cares for her mother who has early dementia. She has a
part-time job and a one-year-old grandson. She feels as if she no longer
has a life of her own. She wants to care for her mother but she also wants
to assist her daughter and enjoy her grandson by looking after him once
a week. She loves her job and her dilemma relates to privacy and an
independent life of her own.

Emotional support
Demonstrate empathy and explore by actively listening to her wishes
regarding a ‘life of her own’.

Practical support
Try to find practical ways to fulfil her wish about ‘a life of her own’
through problem solving and using knowledge of available resources,
such as arranging day care or home care that will be acceptable and
 Personalised Disease Management for People with Dementia 217

enjoyable for her mother by relating to her interests and previous

activities.

Case example – Hannah

Hannah has been caring for her husband with dementia for three
months. She feels exhausted and thinks that her relationship with her
husband has deteriorated. Her daughter Angela persuades her to visit
Aunt Elizabeth for two days while Angela looks after her father. She visits
Elizabeth and enjoys her break very much. However, when she returns
home she finds that her husband’s condition has worsened and the
home is in a mess. She feels guilty, as she now believes that she should
have stayed at home and looked after him herself. The community nurse
considers that an aim of her support will be to improve Hannah’s
interaction and relationship with her husband and to reduce her feelings
of guilt.

Emotional support
Empathic listening with Hannah provides the opportunity to relieve
feelings of distress. Cognitive restructuring would also involve
discussion about whether her expectations of herself were what she
might expect of others, or whether they were, in fact, somewhat
unachievable: assisting her to consider what she can do, rather than
what she feels she ought to do.

Practical support
Make it possible for her to do what she can, and discuss the possibilities
of additional help, including regular breaks.

Case example – Ingrid

Ingrid has worked for several years as a home help for the Jenson family
as Mrs Jenson is disabled following a stroke. She notices that Mr Jenson
is no longer able to visit his daughter because he cannot manage to
travel alone by bus. She also observes that Mrs Jenson is very irritated by
her husband’s behaviour, especially when he forgets things he promised
to do, such as buying milk. She thinks he is cheating on her. What can
Ingrid do to help Mrs Jenson?

Emotional support
Ingrid listens to Mrs Jenson’s concerns about her husband and asks her
what she thinks the reason is for his behaviour. She suggests that Mrs
Jenson asks her husband to visit the GP and, if he will not, that Mrs
218 Early Psychosocial Interventions in Dementia

Jenson contact the GP herself. She tells Mrs Jenson that this seems a
good way to help deal with her anxieties.

Practical support
Ingrid offers to make the appointment with the GP and to arrange
transport to the appointment as Mrs Jenson finds it difficult to travel on
her own. She also suggests that Mrs Jenson makes a list of her concerns
as she finds it difficult to talk with professionals.

As with most problem-solving approaches, each intervention strategy needs to

be evaluated and revised, based on the outcome, so that new plans can be made
if necessary to adequately address the carer’s problems or needs, or to ensure
long-term effects.

What works for whom and what is needed

to maximise outputs?
The principal advantages of this proactive primary carer support programme
are its potential for systematic and integrated carer-specific evaluation, and for
collaborative support that is based on need and available resources. It is there-
fore valuable in a disease management protocol of care or care pathway for
dementia. The programme has a strong theoretical and empirical base and has
been effective in empowering carers by, for example, strengthening their sense
of competence. This in turn has delayed some possible admissions to residen-
tial or nursing homes (Vernooij-Dassen et al. 2000). It can be carried out by a
variety of practitioners, such as GPs, geriatricians, home helps, district nurses
and occupational therapists, and can be incorporated into routine care. For
example, occupational therapists can assess specific problems at home and
respond to these by providing practical and emotional support whilst assisting
primary carers to maximise their relative’s capacities by adapting aspects of
their home, such as by making adjustments to cookers or furniture. Further-
more, the programme encourages collaboration between practitioners. In this
programme the home helps reported feeling better able to deal with some of
the difficult situations that they encountered when providing support to
people with dementia and their families. This programme reflects an opportu-
nity for practitioners to embrace the challenge of ‘doing something’ and not
effectively abandoning people and families due to negative attitudes or
feelings of helplessness about supporting people with dementia and their
carers.
This intervention reflects a proactive focused programme on prevention
(i.e. disease management). One significant difficulty is that such programmes
 Personalised Disease Management for People with Dementia 219

with demonstrated effectiveness are not easy to maintain in daily practice. Im-
plementation usually requires special efforts, such as supervision and support
for the practitioner, to enable systematic evaluation on a routine basis, and to
assist the development of realistic goals which can be reflected on and rede-
fined on an ongoing basis. Although the programme may not require a high
standard of professional qualifications (the original study involved 42 home
helps), it does require motivation, creativity, communication skills and know-
ledge of the local situation. Therefore all disciplines need to be engaged in this
type of support programme, and they need to demonstrate motivation and
‘person-centred’ abilities. We have noted elsewhere that assessment of the need
for support should start early on, such as when the diagnosis of dementia is
disclosed (Derksen et al. 2006) and identification of possible stressors and a
carer’s willingness to take on this role can be discussed in counselling and in-
formation-giving opportunities.
Another problem for all individualised case-specific interventions is the
absence of standardised ‘cookbook’ solutions for every situation. The carer
may require broad abilities among practitioners to identify a wide range of so-
lutions – and in some ways it may be seen as a cooking guide for creative
cooks! Indeed, an aspiration for standardised programmes may be unrealistic
since complex problems do not often have standard solutions (Grol 2001).
While the programme was successful for many, there were some carers who
did not benefit. We re-examined the research data to explore what might be the
common factors, and for whom and why the programmes were successful or
otherwise. This analysis was based on home helps’ diary records of their activi-
ties that generated hypotheses for subgroup analysis. We found that male carers
preferred breaks or forms of respite care and would choose to leave the house
rather than taking the opportunity to talk with the home help. Women who were
not sharing the home with the person with dementia did not make use of
emotional support such as talking to the home helps. In both these situations
there was usually little contact between the home help and primary carer, and
only one component, i.e. practical support, was provided. Interestingly, this
practical support was not enough to strengthen the carers’ sense of competence.
Therefore, in order to enhance disease management, it is important that we
explore the essential ingredients of effectiveness of the programme. What
actually enhanced a sense of competence in primary carers remains unclear.
Future research may also need to examine our impressions that this programme
enhances job satisfaction and feelings of competence for the home helps.
220 Early Psychosocial Interventions in Dementia

Conclusion
Throughout Europe, in common with research undertaken in the USA, care-
givers of people with dementia, especially spouses and partners, often show
high levels of psychological distress or burden (Manthorpe and Moriarty
2007, p.236). Interventions for carers where outcomes are positive are likely to
be achieved by multidimensional interventions that are individually tailored to
their needs (Woods et al. 2003). The primary carer programme is a
problem-solving, crisis preventive, method which offers emotional and practi-
cal support. It can be delivered through a wide range of routine activities. It can
enhance hope and empowerment in carers, and may reduce the likelihood of
admission to residential and nursing homes of the person with dementia.
However, it is dependent on the personal qualities of practitioners and also the
primary carer. Carers who do not live with the person with dementia appear
only to want practical support at this stage but this is highly valued when it is
tailored to individual circumstances.

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Brodaty, H., Green, A. and Koschera, A. (2003) ‘Meta-analysis of psychosocial intervention for
caregivers of people with dementia.’ Journal of American Geriatrics Society 51, 675–664.
Burns, A. and Rabins, P. (2000) ‘Carer burden in dementia.’ International Journal of Geriatric Psychiatry
15, S9–S13.
Derksen, E., Vernooij-Dassen, M., Scheltens, P. and Olde Rikkert, M. (2006) ‘A model for the
diagnosis of dementia.’ Dementia 5, 462–468.
Downs, M., Clibbens, R., Rae, C., Cook, A. and Woods, R. (2002) ‘What do general practitioners tell
people with dementia and their families about the condition? A survey of experiences in
Scotland.’ Dementia 1, 47–58.
Ellrodt, G., Cook, D.L., Lee, J., Cho, M., Hundt, D. and Weingarten, S. (1997) ‘Evidence based
disease management.’ Journal of the American Medical Association 278, 1687–1692.
Gaugler, J.E., Jarrott, S.E., Zarit, S.H., Stephens, M.A., Townsend, A. and Greene, R. (2003) ‘Adult
day service use and reductions in caregiving hours: effects on stress and psychosocial well-being
for dementia caregivers.’ International Journal of Geriatric Psychiatry 18, 55–62.
Goodman, C.C. and Pynoos, J. (1990) ‘A model telephone information and support programme for
caregivers of Alzheimer’s patients.’ Gerontologist 30, 399–404.
Grol, R. (2001) ‘Improving the quality of medical care: building bridges among professional pride,
payer profit, and patient satisfaction.’ Journal of the American Medical Association 286, 2407–2412.
Herbert, R., Levesque, L., Vezina, J., Lavoie, J., et al. (2003) ‘Efficacy of a psychoeducative group
program for caregivers of demented persons living at home: a randomized controlled trial.’
Journal of Gerontology Series B – Psychological and Social Science, 58, S58–S67.
Iliffe, S. and Manthorpe, J. (2004) ‘The recognition of and response to dementia in primary care:
lessons for professional development.’ Learning in Health and Social Care 3, 5–16.
Iliffe, S., De Lepeleire, J., van Hout, H., Kenny, G., et al. (2005) ‘Understanding obstacles to the
recognition of and response to dementia in different European countries: a modified focus group
approach using multinational, multi-disciplinary expert groups.’ Aging and Mental Health 9, 1–6.
Iliffe, S., Wilcock, J. and Haworth, D. (2006) ‘Delivering psychosocial interventions for people with
dementia in primary care: jobs or skills?’ Dementia 5, 327–338.
 Personalised Disease Management for People with Dementia 221

Manthorpe, J. and Moriarty, J. (2007) ‘Models from Other Countries: Social Work with People with
Dementia and Their Caregivers.’ In C. Cox (ed.) Dementia and Social Work Practice. New York,
NY: Springer.
Marshall, V.W. (1986) ‘Dominant and Emerging Paradigms in the Social Psychology of Aging.’ In
V.W. Marshall (ed.) Later Life: The Social Psychology of Aging. Beverly Hills, CA: Sage.
Opie, J., Rosewarne, R. and O’Connor, D.W. (1999) ‘The efficacy of psychosocial approaches to
behaviour disorders in dementia: a systematic review.’ Australian and New Zealand Journal of
Psychiatry 33, 789–799.
Pearlin, L.I. and Schooler, A. (1978) ‘The structure of coping.’ Journal of Health and Social Behaviour 19,
2–21.
Simon, C. and Kendrich, T. (2001) ‘Informal carers and the role of general practitioners and district
nurses.’ British Journal of General Practice 52, 655–657.
van Hout, H., Vernooij-Dassen, M., Bakker, K., Blom, M. and Grol, R. (2000) ‘General practitioners
on dementia: tasks, practices and obstacles.’ Patient Education and Counselling 39, 219–225.
Vernooij-Dassen, M. and Dautzenberg, M. (2003) ‘Collaboration between Lay and Professional
Care.’ In R. Jones, N. Britten, L. Culpepper, D.A. Gass, et al. (eds) Textbook of Primary Medical Care.
Oxford: Oxford University Press.
Vernooij-Dassen, M. and Moniz-Cook, E. (2005) ‘Editorial.’ Dementia: The International Journal of
Social Research and Practice 4, 163–169.
Vernooij-Dassen, M., Felling, A.J.A. and Persoon, J.M.G. (1996) ‘Predictors of sense of competence
in primary caregivers of demented persons.’ Social Science and Medicine 43, 41–49.
Vernooij-Dassen, M., Felling, E., Brummelkamp, M., Dautzenberg, G., van den Bosch, R. and Grol,
R. (1999) ‘Short sense of competence questionnaire (SSCQ): measuring the caregiver’s sense of
competence.’ Journal of the American Geriatrics Society 47, 256–257.
Vernooij-Dassen, M.J.F.J., Lamers, C., Bor, J., Felling, A.J.A. and Grol, R. (2000) ‘Prognostic factors
of effectiveness of a support programme for caregivers of dementia patients.’ International Journal
of Aging and Human Development 51, 259–274.
Vickrey, B., Mittman, B., Connor, K.I., Pearson, M.L., et al. (2006) ‘The effect of a disease
management intervention on quality and outcomes of dementia.’ Annals of Internal Medicine 145,
713–726.
Woods, R., Moniz-Cook, E., Iliffe, S., Campion, P., et al. (2003) ‘Dementia: issues in early
recognition and intervention in primary care.’ Journal of the Royal Society of Medicine 96, 320–323.

Further Reading and Related References

Moniz-Cook, E. and Vernooij-Dassen, M. (2005) ‘DIADEM: European Variations in Diagnosis and
Post-diagnosis Support for People with Dementia.’ In P. Dorenlot (ed.) Supporting and Caring for
People with Early Stage Dementia: Challenges, Practice and Perspectives. Paris: Fondation Médéric
Alzheimer.
Vernooij-Dassen, M. and Olde Rikkert, M.G.M. (2004) ‘Personal disease management in dementia
care.’ International Journal of Geriatric Psychiatry 51, 259–274.
Vernooij-Dassen, M., Huygen, F., Felling, A. and Persoon, J. (1995) ‘Home care for dementia
patients.’ Journal of the American Geriatric Society 43, 456–457.
Vernooij-Dassen, M., Moniz-Cook, E.D., Woods, B., de Lepeleire, J., et al. (2005) ‘Factors affecting
timely recognition and diagnosis of dementia across Europe: from awareness to stigma.’
International Journal of Geriatric Psychiatry 9, 1–6.
Chapter 16

Carer Interventions
in the Voluntary Sector
Georgina Charlesworth, Joanne Halford,
Fiona Poland and Susan Vaughan

Overview
Voluntary and charitable organisations have an important role to play in pro-
viding supportive, non-stigmatising, user-friendly services for carers. This
chapter provides theoretical background to social support, and describes two
different UK examples of support interventions for carers of people with
dementia where voluntary organisations are the service providers. The first
example is of a group educational programme and the second is a befriending
scheme. Common to each example is a desire for carers to be supported in a
holistic way, with access to emotional, informational and instrumental
support, within a context of respecting the ‘personhood’ of both the carer and
the person with dementia. Both examples include vignettes showing how
support through voluntary sector interventions can make a real difference to
carers of people with dementia.

Social support theory and practice

Cowen (1982) defined social support as ‘informal interpersonal help with
emotional problems’ (p.385). Around the same time, House (1981) concep-
tualised social support in terms of content, or functions, suggesting dimen-
sions of emotional, informational and instrumental support. Kahn and
Antonucci (1980) combined social role and social support theories to propose
the life course social support model.

222
 Carer Interventions in the Voluntary Sector 223

By the mid-1980s, social support was being reconceptualised, with

Thoits (1986) framing social support as ‘coping assistance’. Heller, Swindle
and Dusenbury (1986) moved away from the language of ‘problems’ to
‘needs’, defining social support as ‘any informal human interaction that meets
psychological needs or which helps individuals cope with adversity’ (p.466).
Psychological needs were seen as including: attachment needs (a close rela-
tionship that would allow nurturance, unconditional assistance and safety);
social integration needs (a sense of belonging); social validation needs (recog-
nition of identity and competence); and need for guidance (advice and infor-
mation). In his book Social Therapy Milne (1999) brought together previous
definitions as follows:
Social support…refers to the provision of informal help in order to try and
meet someone’s psychological needs… It consists structurally of informa-
tional, practical and emotional assistance (e.g. sympathetically listening to a
neighbour) and companionship. (Milne 1999, p.4)
It has been suggested that emotional, informational and practical (instrumen-
tal) dimensions of social support can each be related to a different mechanism
of change (Barker and Pistrang 2002; Hogan, Linden and Najarian 2002;
Noon 1999). More specifically, emotional support that involves verbal and
non-verbal communication of caring and concern is believed to reduce distress
by restoring self-esteem and permitting the expression of feelings, whereas in-
formational support (provision of information to be used as a guide) is believed
to enhance perceptions of control by reducing confusion and providing
people with strategies to cope with their difficulties.

Example 1: Positive Caring Programme

The Positive Caring Programme aimed to meet carers’ needs for information
about living with dementia through group psycho-educational meetings
provided by Alzheimer’s Society branch workers. Typical of information and
education sessions described in research literature (see Briggs and Askham
1999), the programme consisted of six weekly sessions, each lasting approxi-
mately two hours, and covering a different topic each week. Information was
provided on the caring role, dementia, benefits, the law, local services and
practical care management advice (e.g. moving, handling and equipment).
Time was also spent developing carers’ stress management skills such as relax-
ation and communication. Efforts were made to provide ongoing support for
carers by building up good relationships and maintaining contact beyond the
end of the group.
224 Early Psychosocial Interventions in Dementia

Case example – Betty and Jim

After 50 years of happy marriage, Betty began to notice changes in her
husband Jim’s behaviour. Over the previous two years he had started to
become confused and forgetful. He was finding it increasingly difficult to
recall recent events. He was becoming quite anxious, and Betty was too.
At first she hoped Jim would get better, but things only got worse, so she
went to their family doctor. Jim was referred to see a psychiatrist. That
was the start of a lot of questions and tests. Eventually Jim was given the
diagnosis of Alzheimer’s disease. At the time Betty did not have much of
an opportunity to discuss her husband’s problems, and afterwards she
found she had lots of questions in her mind. Some time later another
family doctor in the practice suggested that she get in touch with the
Alzheimer’s Society. She found out about the Positive Caring
Programme being run by her local branch, but initially thought she
wouldn’t be able to attend as she didn’t want to leave Jim alone. The
group co-ordinator told her about a sitting service that could be
arranged where a careworker would spend time with Jim at home. The
service was arranged and Betty attended the group. Even after the first
session, she felt as if a weight had been lifted from her shoulders. At last
she was getting answers to all the questions she had never had the
opportunity to ask. She was able to share her experiences with other
carers and learn that she wasn’t the only one who felt frustrated and
angry with their loved one. She found out about different kinds of
allowances and suggestions for organising finances. She learned ways
of understanding and coping with her husband’s behaviour, and also
ways to look after herself. At the end of the course she commented, ‘The
whole course has been very helpful. I cannot believe how much it has
helped me cope with our situation.’

An evaluation of the programme was carried out between September 2001

and April 2002 (Halford 2002) with a total of 24 attendees from courses in
four different locations within East Anglia (Mid-Suffolk, Norwich,
Huntingdon and Ipswich). Carers were predominantly female (n = 17), with
one in three participants being wives (a quarter daughters and a quarter
husbands). Carers’ mean age was 68 years (range 43 to 81 years), with the
majority of carers over the age of 60 (n = 19).
A repeated measures design (‘before and after’) was used, measuring levels
of knowledge, anxiety, depression, threat and self-efficacy (Halford 2002).
Formal psychometric measures were used in the evaluation, including: the
Dementia Quiz (Gilleard and Groom 1994), a 25-item multiple choice ques-
tionnaire with three subscales – biological (Biology), coping (Coping) and
knowledge of services (Services); State-Trait Anxiety Inventory, STAI
(Spielberger, Gorush and Lushene 1970); Centre of Epidemiologic Studies
 Carer Interventions in the Voluntary Sector 225

Depression Scale, CES-D (Radolf 1977); Generalised Self-Efficacy Scale,

GSES (Schwarzer and Jerusalem 1993); and the threat subscale from the Stress
Appraisal Measure, SAM (Peacock and Wong 1990).
Table 16.1 shows the pre- and post-group mean scores for the measures
used. Results indicated that, as a group, carers developed greater knowledge
and self-efficacy and reported less anxiety, depression and perceived threat.
However, the only statistically significant change was the increase in biologi-
cal knowledge as measured by the subscale of the Dementia Quiz.

Table 16.1 Pre- and post-group mean scores

(standard deviation) for 24 participant carers
Pre-group (s.d.) Post-group (s.d.) Sig. (2-tailed)
Knowledge total 15.88 (5.2) 17.92 (2.9) 0.08
Biology1 4.33 (2.1) 5.83 (1.3) 0.00*
Coping1 5.79 (2.1) 6.75 (1.6) 0.06
Services1 5.54 (2.0) 5.33 (1.0) 0.47
Self-efficacy4 28.54 (4.1) 30.04 (4.5) 0.09
Depression 3 14.25 (10.6) 13.21 (9.3) 0.51
Anxiety
State2 40.96 (12.1) 37.71 (10.1) 0.10
Trait2 40.46 (11.3) 40.08 (11.6) 0.83
Threat5 13.54 (4.1) 12.13 (4.8) 0.12

*significant at the 0.01 level (2-tailed).

1 Dementia Quiz subscales – biological (Biology), coping (Coping) and knowledge of

services (Services): higher scores = greater knowledge.

2 State–Trait Anxiety Inventory: higher scores = more anxiety.
3 Centre of Epidemiologic Studies Depression Scale: lower scores = less depression.
4 Generalised Self-Efficacy Scale: higher scores = greater self-efficacy.
5 Threat subscale from the Stress Appraisal Measure: lower scores = less threat.

Very few psychosocial interventions have used anxiety measures to evaluate

outcome for carers. Whilst some studies report no significant difference in
informal caregivers’ anxiety levels post-intervention (Lazarus et al. 1981;
Wilkins et al. 1999), Millan-Calenti and colleagues (2000) reported a signifi-
cant decrease in state anxiety but not trait anxiety. That is, the intervention used
by Millan-Calenti and colleagues led to a reduction in carers’ current levels of
anxiety (‘state’ anxiety), but did not have an effect on their longstanding,
pre-caring tendency to experience anxiety (‘trait’ anxiety). Results for the
Positive Caring Programme are similar, but the small sample size means that
the results were not statistically significant. Based on the effect sizes found in
the Positive Caring Programme evaluation for the state anxiety change score
(0.32) and total dementia knowledge scale (-0.41), it was estimated that a
226 Early Psychosocial Interventions in Dementia

sample of 84 participants would be needed to demonstrate a statistically sig-

nificant increase in levels of knowledge and reduced anxiety.

Example 2: BECCA Befriending Scheme

Befriending and Costs of Caring (BECCA) is a befriending scheme evaluated
within a randomised controlled trial (see www.ncchta.org/project/
htapubs.asp, accessed 11 August 2008). The effectiveness of befriending
schemes is unclear (Cattan et al. 2005), with one study on peer support for
carers in the USA showing little measurable effect, with relationships lasting
only a matter of months (Pillemer and Suitor 2002). Therefore, BECCA
provides a welcome addition to the literature on long-term befriending for
carers where the service was compared with ‘support as usual’ over a number of
years. Here, befriending is defined as ‘the provision of companionship and
conversation’, so focusing on emotional support. In this scheme, befriending is
provided by trained befriending volunteers who commit to an hour per week
for a minimum of six months. The befriending volunteers do not provide
direct instrumental support or practical help to the carer, nor do they take the
place of the carer, home care or nursing staff, as they do not provide any assis-
tance for the person with dementia. Befrienders are not primarily information
providers, but they are encouraged to ‘signpost’ carers to information and
services as necessary.
The BECCA befriending scheme was initially set up in Norwich, UK, with
an employed befriender facilitator based at the local volunteer bureau
(Norwich and Norfolk Voluntary Services, NVS). NVS has appropriate public
liability insurance and experience of managing other befriending projects, in-
cluding a scheme for people with mental health problems and a scheme for
people with physical disabilities. The scheme has now been extended to other
parts of the county of Norfolk, in partnership with local branches of the Alz-
heimer’s Society. In addition, two further schemes have been established
within Age Concern, in the county of Suffolk and the London Borough of
Havering, with part-time paid befriender facilitators based in Lowestoft,
Ipswich and Harold Hill.
The paid befriender facilitators are responsible for the recruiting, screen-
ing, training and matching of volunteers, and the ongoing monitoring and
support of befriender–carer relationships. The registration and screening pro-
cedure for volunteers includes use of a registration form, taking up of two ref-
erences, and Criminal Records Bureau disclosures. All volunteers complete 12
hours of training, including: listening skills, stages of the befriending relation-
ship, boundaries to the befriending role, carers’ needs, understanding
dementia and working safely in other people’s homes. Training is supported
 Carer Interventions in the Voluntary Sector 227

by a written manual and carried out by the befriender facilitators in conjunc-

tion with other (usually local) trainers who have knowledge or expertise
relevant to particular aspects of the training session.
Fourteen months after the first befriender facilitator came into post, there
had been 68 expressions of interest from potential befriending volunteers, and
six training courses had been held. Nine matches had been made with carers
from a pool of 18 trained and screened befrienders. The first nine matched
befrienders were predominantly female (seven of the nine) with a mean age of
65 (range 46 to 81 years). Many of these befrienders had previous experience
as a carer, either of a family member or in a paid, non-family capacity. The be-
friended carers were also predominantly female (six wives of people with
dementia, one husband, one daughter and one son), with a mean age of 68
(range 60 to 85). When asked to comment on their perception of the quality of
the relationship with the befriender after one month, 67 per cent of carers
rated the relationship as good or excellent. None of the carers expressed any
concerns or complained of a poor relationship.

Case example – Charles and Judy

Charles had found his quality of life had diminished over the past three
years since his wife, Judy, had started to develop signs of dementia.
While they had both enjoyed taking part in the life of their small village
for several years after Charles’s retirement they had now almost become
‘prisoners in their own home’. Many of their friends had either moved
away, had difficulties of their own to deal with, or were unsure how to
relate to them now that Judy had dementia. Charles and Judy were in
contact with health and social services and Judy attended a day centre
once a week, but Charles was feeling isolated. He would sometimes
catch himself talking out loud and realise that he had not had a
conversation with anyone for days.
Charles took part in the BECCA research project and was
randomised to the intervention (befriending) arm of the trial. He met the
befriender facilitator and was matched with a befriender from a small
town some miles away from his home. The befriender arranged to visit
Charles every other week, when Judy was at the day centre, and to talk
on the phone during the weeks that they didn’t meet. Charles had the
opportunity to talk to someone in a way that he didn’t feel free to do with
his own family and this brought him great relief. In addition, little things
would come up in conversation that made a big difference to the quality
of both his life and also that of Judy – even though the befriender and
Judy never met. For example, the befriender was able to signpost
Charles to the voluntary driver scheme which provided assistance for
people getting to hospital appointments, and also to the organisation
228 Early Psychosocial Interventions in Dementia

that provided keys for disabled toilets. Charles was delighted as he had
been getting concerned about the costs of taxis for hospital visits, and
also he and his wife had declined going on trips as he wasn’t able to
assist her in public toilets. Soon Charles and his wife were once again
able to enjoy trips out together.

Concluding remarks
The voluntary and charitable sectors provide a wealth of expertise in the
support of interventions by volunteers, and in meeting differing social support
needs of family carers. The support they provide can often be especially well
tailored to individual circumstances and to local networks and communities.

Acknowledgements
The Positive Caring Programme was funded by a Lottery grant to the Eastern
Region of the Alzheimer’s Society, UK. The evaluation was carried out by
Joanne Halford and supervised by Malcolm Adams. The evaluation, supported
by the Alzheimer’s Society, was approved by the University of East Anglia’s
Health Schools’ Ethics Committee.
Fiona Poland and Georgina Charlesworth are part of the Befriending
and Costs of Caring (BECCA) research team. The BECCA project
(ISRCTN08130075), including the befriender facilitator posts, is funded by
the Health Technology Assessment (HTA) Programme (project number
99/34/07). Befrienders’ expenses are funded by Norfolk and Suffolk Social
Services, the King’s Lynn and West Norfolk branch of the Alzheimer’s Society,
and an ad hoc grant from the Department of Health to North East London
Mental Health Trust. The views and opinions expressed in this chapter are
those of the authors and do not necessarily reflect those of the Department of
Health.

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Cattan, M., White, M., Bond, J. and Learmouth, A. (2005) ‘Preventing social isolation and loneliness
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Psychology 33, 529–534.
Halford, J. (2002) ‘An investigation into the relationship between knowledge of dementia and
anxiety levels in informal caregivers looking after a person with dementia.’ Thesis. School of
Medicine, University of East Anglia.
 Carer Interventions in the Voluntary Sector 229

Heller, K., Swindle, R.W. and Dusenbury, L. (1986) ‘Component social support processes: comments
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Orlando, FL: Academic Press.
Lazarus, L.W., Stafford, B., Coope, K., Cohler, B. and Dysken, M. (1981) ‘A pilot study of an
Alzheimer’s patients’ relatives discussion group.’ Gerontologist 21, 353–358.
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M.P. and Mayan-Santos, J.M. (2000) ‘Helping the family carers of Alzheimer’s patients: from
theory to practice. A preliminary study.’ Archives of Gerontology and Geriatrics 30, 131–138.
Milne, D.L. (1999) Social Therapy: A Guide to Social Support Interventions for Mental Health Practitioners.
Chichester: Wiley.
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Further reading and related references

Charlesworth, G., Mugford, M., Shepstone, L., Wilson, E., Thalanany, M. and Poland, F. (2008)
‘Does befriending by trained lay workers improve psychological well-being and quality of life
for carers of people with dementia, and at what cost? A randomised controlled trial.’ Health
Technology Assessment, 12. Available at www.ncchta.org/project/htapubs.asp, accessed 11
August 2008.
Charlesworth, G., Shepstone, L., Wilson, E., Reynolds, S., Mugford, M., Price, D., Harvey, I.
and Poland, F. (2008) ‘Befriending carers of people with dementia.’ British Medical Journal,
336(7656), 1295–1297.
Charlesworth, G., Tzimoula, X., Higgs, P. and Poland, F. (2007) ‘Social networks, befriending and
support for family carers of people with dementia.’ Quality in Ageing – Policy, Practice and Research
8, 2, 37–44.
Hooper, E., Charlesworth, G., Poland, F. and Vaughan, S. (2004) ‘Recruiting carers and befrienders:
experiences from the Befriending and Cost of Caring (BECCA) study.’ Signpost 9, 1, 7–10.
Knights, N., Tzimoula, X., Clarke, H., Bartlett, A. and Charlesworth, G. (2006) ‘Loneliness and
befriending.’ PSIGE – Psychology Specialists Promoting Psychological Wellbeing in Later Life Newsletter
– 96, 29–32. Available at www.psige.org/newsletters.php, accessed 11 August 2008.
List of Contributors

Emer Begley is a PhD student at Trinity College Dublin. She was the Irish research
co-ordinator for the ENABLE project. Her research interests include the lived experi-
ence of dementia and social and health care policy.
Molly Burnham is a retired Occupational Therapist living in the south of England.
She has a particular interest in the role of the occupational therapist in helping
maintain the lifestyles of people with dementia and their families.
Suzanne Cahill is the Director of The Dementia Services Information and Develop-
ment Centre at St James Hospital in Ireland and a Lecturer in Social Policy in Ageing at
Trinity College Dublin. Her research interests include dementia and quality standards,
assistive technology, family caregiving, and the assessment of dementia in primary
care.
Inge Cantegreil-Kallen, PhD, is a Clinical Psychologist and researcher at the De-
partment of Clinical Gerontology, Broca Hospital in Paris and INTERDEM
co-ordinator for France. Her current interests are obstacles and facilitators in diagnos-
ing dementia, disclosure of diagnosis, support interventions for caregivers and
systemic family therapy in Alzheimer’s disease.
Irene Carr is a Lecturer in Mental Health for Older People at the Institute of Health
and Social Care, Guernsey. Her initial area of interest was psychosocial interventions
in the early stages of dementia, but has now broadened to include a wide range of
nurse/formal carer education regarding most aspects of dementia care. Her current
research focus is superstition in dementia pertaining to Guernsey residents.
Georgina Charlesworth, PhD, is a Lecturer in Clinical and Health Psychology of
Old Age at University College London and a Consultant Clinical Psychologist in the
NHS, UK. Her research interests are in psychosocial interventions for family carers of
people with dementia.
Rabih Chattat is Associate Professor of Clinical Psychology at the Faculty of Psy-
chology, University of Bologna. His interests are in both psychosocial intervention
with people with dementia and their caregivers, and in the training of practitioners.
Linda Clare, PhD, Professor in Psychology, is a Clinical Psychologist at the Univer-
sity of Wales Bangor. Her research interests focus on psychological understanding and
intervention in cognitive impairment and dementia, including memory rehabilitation.

230
 List of Contributors 231

Richard Cheston is a Consultant Clinical Psychologist working for Avon and

Wiltshire Mental Health Care Partnership Trust in England and Honorary Lecturer at
Bath University. His main research interest concerns the development of psychosocial
interventions based on an understanding of the experiences of people with dementia.
Jacomine de Lange is Senior Researcher at the Trimbos-institute, Netherlands Insti-
tute of Mental Health and Addiction and Associate Professor at the Institute for Health
Care Studies, Rotterdam. Her interests are in research and education in care for older
people and their carers and particularly in dementia care.
Jocelyne de Rotrou, PhD, is a Neuropsychologist at the Broca Hospital in Paris. Her
current research interests are screening tests for dementia and psycho-educative
programmes for dementia caregivers.
Rose-Marie Dröes, PhD, is Associate Professor responsible for the research
programme Care and Support in Dementia at the Department of Psychiatry and the
Alzheimer centre of the VU University medical centre in Amsterdam and the Regional
Mental Health Care Institute GGZ-Buitenamstel Geestgronden in Amsterdam. Her
research interests are the needs of people with dementia and their carers, development
and effectiveness of psychosocial interventions (including support by means of infor-
mation technology), and implementation of proven effective psychosocial interven-
tions for people with dementia and their carers, such as the Meeting Centres Support
Programme.
Manuel Franco is Head of Psychiatry, Department of Zamora Hospital, Spain. He is
Associate Professor at Salamanca University and the Research and Development
Director of the INTRAS Foundation. He is also Co-Director of Neuropsychologic
Program of Salamanca, Spain.
Marie V. Gianelli is Associate Professor at the Faculty of Medicine and Surgery, Uni-
versity of Genova (Italy), a member of INTERDEM and a Consultant Psychologist for
INRCA (Italian National Research Centre on Ageing). She is a clinical psychologist
and her main interests are in clinical practice, research and training for practitioners on
psychosocial approaches to dementia.
Gillian Gibson, RGN, BSc (Hons) Psychology, now retired, was a Project Psycholo-
gist at the Hull Memory Clinic from its inception in 1991.
Pablo Gomez, is Manager of the INTRAS Spain Foundation where he is the Director
of European programmes.
Maud Graff, PhD, is a Researcher at the Alzheimer’s Centre and Researcher at the
Occupational Therapy Department of the Radboud University Medical Centre,
Nijmegen. Her research interests are in the field of occupational therapy in older
people with dementia and their primary caregivers, focusing on daily functioning and
quality of life, and on caregiver competence and quality of life.
Inger Hagen, MSc (Chemistry), PhD (Faculty of Medicine, University of Oslo),
started her own company in 1998. Based on experiences as family carer she has
232 Early Psychosocial Interventions in Dementia

developed assistive aids for people with dementia to support time orientation and
planning of daily activities.
Joanne Halford is a Chartered Clinical Psychologist working in her own private
practice based in Kent and Surrey. Her specialist interests include neuro-rehabilitation,
dementia carer stress and general adult mental health.
Jaswinder Harrison, Clinical Psychologist, has worked at Hull Memory Clinic, UK
for over two years as a Clinical Psychologist. Her research interest are on the effects of
personality on the adjustment to dementia in patients and their family members.
Hilary Husband is a Consultant Clinical Psychologist with the Norfolk and
Waveney Mental Health Partnership Trust and Honorary Lecturer at the University of
East Anglia, UK. Her research interests include professionals’ communication skills
and interventions in dementia.
Karen Jarvis received The Queen’s Nursing Institute Award for Nursing and also a
Health Action Zone Fellowship. These enabled her to develop work with people with
dementia and their families. Karen is a Community Mental Health Nurse for Older
People working with Humber Mental Health Teaching NHS Trust in Hull, England.
Kate Jones, PhD, is a Research Fellow at the Dementia Services Development Centre,
University of Wales Bangor, supporting the Wales Dementias and Neurodegenerative
Diseases Research Network (NEURODEM Cymru). She has contributed to a number
of evaluation projects in dementia care, including a study of reminiscence work for
people with dementia and their carers jointly.
Jill Manthorpe is Professor of Social Work and Director of the Social Care
Workforce Research Unit at King’s College London, UK. Her research interests
include social care for older people and carers: covering risk, safeguarding, ethics and
mental capacity.
Franka Meiland, PhD, is Senior Researcher at the Department of Psychiatry, VU
University Medical Centre, and GGZ Buitenamstel Geestgronden in Amsterdam. Her
research interests include psychosocial interventions and information technology so-
lutions to support people with dementia and their carers: development, effect studies
and implementation.
Esme Moniz-Cook, PhD, is Chair of INTERDEM, Professor of Clinical Psychology
and Ageing at the Institute of Rehabilitation, University of Hull, UK and a Consultant
Clinical Psychologist in the NHS, UK. Her interests are in clinical practice and
research on timely psychosocial intervention in early dementia and challenging
behaviour.
Marcel Olde Rikkert is Head of the Department of Geriatric Medicine, University
Medical Centre Nijmegen, Director of Alzheimer Centre Nijmegen (ACN), Principal
Investigator in the Nijmegen Centre for Evidence Based Practice, and member of the
Board of the European Alzheimer’ Disease Consortium. The Nijmegen Geriatric
Research Programme focuses on clinical research in brain failure with age, and
 List of Contributors 233

promotes trials, descriptive studies and development of research methods within the
Alzheimer Centre Nijmegen.
Fiona Poland is a sociologist and Senior Lecturer in Therapy Research in the School
of Allied Health Professions at the University of East Anglia. Her research interests
include community-based research, carer and older people’s support, and social
networks.
Anne-Sophie Rigaud, MD, is Professor of Geriatrics, Head of the Department of
Clinical Gerontology at the Broca Hospital in Paris. She is an INTERDEM member
and also member of the European Alzheimer’s Disease Consortium (EADC). Her
research interests include vascular dementia, Alzheimer’s disease and mild cognitive
impairment.
Giancarlo Savorani, MD, Geriatrician, is responsible for the Psychogeriatrics Unit at
the Division of Geriatric Medicine of S. Orsola-Malpighi University Hospital in
Bologna, Italy. His main activities are in the assessment and treatment of people with
dementia and their caregivers and developing and promoting memory training
programmes for healthy older people.
Steffi Urbas is an Art Therapist based at the Alzheimer Therapiezentrum der
Neurologischen Klinik Bad Aibling, Germany.
Willem van Tilburg, MD, PhD, is Emeritus Professor in Clinical Psychiatry at the
VU University Medical Centre and retired Medical Director of the Regional Mental
Health Care Institute GGZ-Buitenamstel Geestgronden in Amsterdam. As a head of
the Department of Psychiatry of the VU University medical centre he was supervisor
of the developmental and research project Meeting Centres Support Programme
between 1992 and 2003.
Susan Vaughan was the Befriender Facilitator (Norfolk) for the Befriending and
Costs of Caring (BECCA) Research Project from 2002 to 2006, and is now retired.
Myrra Vernooij-Dassen is Co-Chair of INTERDEM, a Medical Sociologist in the
Centre for Quality of Care Research, Principal Investigator in the Nijmegen Centre for
Evidence-Based Practice and Director of the Alzheimer’s Centre, Nijmegen (ACN) of
the Radboud University Medical Centre. Her research interests include quality of care,
psychosocial interventions, collaboration with professionals, carer competence and
family support.
Hannah Wilkinson, BSc (Hons) Psychology, is a Research and a Clinical Assistant
Psychologist at the Hull Memory Clinic. Her interests are in promoting healthy active
lifestyles in early dementia and also in the role of social participation group interven-
tions and maintenance of well-being in early dementia.
Bob Woods is Professor of Clinical Psychology of Older People at the University of
Wales Bangor, where he directs the Dementia Services Development Centre. His
research interests relate to the evaluation of psychological interventions for people
with dementia and their supporters.
Index

activity problems, difficulty initiating associative memory deficits 89 Brenes, G. 63

actions 61 Astell, A. 88 Breuil, V. 86
Acton, G.J. 212 autobiographical memory 22 Briggs, K. 223
Adaptation-Coping Model 202–3 see also reminiscence therapies Broca’s area, potential deficit problems
see also stress–appraisal–coping Autobiographical Memory Interview 59
model; (AMI) 168–9 Brodaty, H. 14, 187, 195, 213
stress–coping/adaptation autonomy and control measures 63 Brody, E.M. 100
theory Brooks, J.O. 96
ADAS (Alzheimer’s Disease Bruce, E. 156, 158–9, 161, 167
Assessment Scale) 100 Bäckman, L. 66, 74, 77, 88, 96 Brush, J.A. 75
advice see guidelines; information Baddeley, A.D. 112, 168 Bryden, C. 136
giving Bailey, M. 46 Bryden-Boden, C. 20
Age Concern Surrey 176 Baker, S. 147 Bucks, R. 88
Age Exchange (London) 156 Ballard, C. 53 Burgener, S.C. 17
Aggarwal, N. 26 Bamford, C. 17 Burgess, R. 26
Albert, M. 87 Barker, C. 223 Burns, A. 53, 136, 177, 180, 213
alcohol 53 Barthel Index 100 Butcher, J. 21
Allen, C.K. 111 Barthel, D.W. 100 Butti, G. 95
Allen, K. 158 Bartlett, E. 175
‘Alzheimer’s Café’ 28 Barton, J. 46, 138
Alzheimer’s Europe 23 Bassett, R. 22 Cahill, S. 121, 129
Alzheimer’s Society, Positive Caring Bauckham, P. 140, 156, 160, 165, calendars, assistive devices 119–30
Programme 223–6 175 Cambridge Cognitive Examination for
Amieva, H. 90 Beavis, D. 15 Mental Disorders (CAMCOG-R)
AMPS (Assessment of Motor and BECCA Befriending Scheme 22, 100
Process Skills) 111, 112 226–8 Cameron, C. 14, 17
Anderson-Hanley, C. 195 Beck, A.T. 47 Cameron, M.H. 86, 90
Aneshensel, C.S. 211 befriending schemes 226–8 Camp, C. 18, 63, 74–5, 75, 94
Antonucci, T.C. 222 behaviour therapy 21 Campbell, A. 13
anxiety management 21 Belgium Campus, J. 28
aphasias 59 early diagnosis issues 19 Cantegreil-Kallen, I. 85, 87
Archer, S. 176 funding and service provisions 12 Caregiver Burden Inventory (CBI)
Archibald, C. 176 Benbow, S. 15 191–2, 193
Arkin, S.M. 77 Bender, M. 26, 140, 156, 160, 165, carer needs
art therapy interventions 146–54 175–7, 181 assessment measures 191–2, 193,
aims and rationale 147–8 Bengtson, V.L. 213–14 215, 224–5
methods and practices 148–53 Benham, L. 147 evidence-based studies 14
connection with self and others Berger, B 17 see also family carers
148, 150–1 Bird, M. 18, 63, 75 carer-focused psycho-educational
expression without words Bjork, R.A. 94 support groups 186–95
148–50 Bjørneby, S. 116 see also Meeting Centres Support
presenting self 153 Blackwell, A. 89 Programme
spontaneous actions and Blom, M. 28 Caron, W.A. 195
instincts 151–3 Bond, J. 26 Carver, C.S. 192
see also collage work Bornat, J. 157 ‘cash for care’ services 23
Askham, J. 223 Bourgeois, M.S. 76 Cattan, M. 226
assessment frameworks for Bowler, J. 53 Centre for Epidemiological Studies
interventions 24 Bozoki, A. 87 Depression Scale (CES-D)
assistive technologies brain structures and functions, 224–5
ENABLE study findings 121–30 potential deficit problems 59 Chambers, P. 176
evaluation of devices 119–20 Brandt, J. 73–4 change and dementia 213
see also memory aids Breda, J. 19, 23 Charlesworth, G. 46, 187

234
 Index 235

Cherry, K. 18, 63 counselling services, post diagnosis personalised approaches 23–6

Cheston, R. 46, 136, 141, 143, 170, 45–6 potential drawbacks, mood
175 couple participation in group problems 51–2
choice of interventions 24–6, 27–9 reminiscence 165–9 practice considerations 24–6
Christensen, H. 74 Cowen, E.L. 222 protocols and programmes 55–6
Cimetière, C. 85 Crutch, S.J. 146 cognition-orientated activities
Clare, L. 18, 22, 26, 46, 65, 73–8, cues and prompts 65, 76 63–6
86, 90, 107, 175 Cuijpers, P. 202 information giving activities
Clarke, C. 15 Cummings, J.L. 191, 204 56–62
Clinician’s Global Impressions tool promoting control and pleasure
100 63
Clock Drawing Test 100 Daly, T. 176 promoting general health 62–3
co-working 139 Dartigues, J.F. 90 promoting social and
Cochrane protocols and reviews, Dautzenberg, M. 211 pleasurable activities 66–7
overview of interventions 35–6 Davidson, K. 176 rationale for use 52–5
Cockburn, J. 112 Davis, K.L. 100 types
cognitive assessment tools 98, 100–1 de Boer, M.E. 19 intensive communication
cognitive behavioural therapy de Klerk-Rubin, V. 175 methods 20
post diagnosis 46 de Rotrou, J. 82–7 signposting 20
case example 46–8 delayed recall 85 standard psychological
cognitive focused interventions as predictor of dementia 88 therapies 21
aims and tasks 30 dementia therapies to promote well-being
guidelines 30 attitudes towards 16–20 21–2
see also individual therapies diagnosis 14–15, 17–20 see also support around diagnosis
cognitive maps 58–60, 62 Dementia Quiz 224–5 educational sessions seegroup-based
Cognitive Rehabilitation (CR) 21–2, Dementia Voice Group Psychotherapy psycho-educational interventions
64, 73–8 (DVGP) project 140–3 Edwards, A.B. 189
building on retained memory depression 176–8 Eggermont, L. 53
74–6 Derksen, E. 219 Ellrodt, G. 211
case examples 64–5 DIADEM study 15–16, 18 ENABLE project 115–30
compensating for problems 76 diagnosis issues 14–15 background and aims 115–16,
guidelines 77 case example 46–8 117–18
implementing CR interventions 77 disclosure considerations 40–3 Irish context 117–21
see also GRADIOR (personalised disclosure rates 41–2 criteria for participation 118
computer-based CT fears and anxieties 43–5 description of assistive
programme) secrecy and concealment 44 technologies evaluated 119
‘cognitive reserve’ 18, 53, 82–3 stigma concerns 17–20 recruitment and selection of
Cognitive Stimulation Therapy (CST) withholding information 40–1, 43 participants 120
21–2, 81–90 see also support around diagnosis study findings and outcomes
background and overview 81 diary-keeping 84, 94 121–30
concept and definitions 82–5 Disch, R. 156 Engelborghs, S. 53
evidence-base (France) 85–6 disclosure of diagnosis 40–3 ‘enhancing of neuronal reserves’ 53
goals and methods 82–5 carer attitudes 42–3 epidemiology of dementia, incidence
session contents 84–5 impacting on early intervention and prevalence data 12
new directions 86–7 initiatives 54–5 episodic memory 82
developing programmes and informing carers 42 Epstein, C. 18
frameworks 87–9 rates of disclosure 41–2 Erde, E. 43
cognitive therapy 21 timing problems 54 errorless learning techniques 75
Cognitive Training (CT) 21 ‘double stigma’ issues 15–16 establishing supportive services
collage work 158–61, 163–4 Downs, M. 212 aims and tasks 31
compensation techniques (memory) Driver, B. 147 guidelines 31
65, 76, 93–4 Dröes, R.M. 202–3, 205 European comparisons
computer-aided rehabilitation 93–104 drug therapies 14–15 epidemiological data 12
background and evidence-base Dunkin, J. 195 funding and service provisions 12
93–7 Dusenbury, L. 223 as models for practice 13–14
benefits 97 ‘dysexecutive syndrome’ 62 stigma and attitudes 18–20
problems and remedies 96–7 Everybody’s Business (DoH 2005) 137
control and autonomy measures 63 evidence-based studies, gaps in
Cooke, D.D. 187 Eagger, S. 46, 138 knowledge 13–14
Coon, D.W. 187–9 early dementia, identification executive function exercises 85
coping with diagnosis 43–5 problems 14 external memory aids 63–4
Coping Orientations to Problems early psychosocial interventions 20–3 see also assistive technologies
Experienced (COPE) 192, 193 choice and selection frameworks
coping theory 202 24–6, 27–9
Cossio, A. 147 importance of evidence-base 13, face recognition programmes 65
cost benefit analysis 23 23 Falk, B. 147
236 Early Psychosocial Interventions in Dementia

falls prevention, information and Goodman, C.C. 212 Halford, J. 224

advice 58, 61 Gorush, R.L. 224–5 Hanley, I. 76
family care giving needs see carer needs Gosselin, A. 86 Happiness, Confidence and Affect
family carers Goudie, F. 136 self-rating scales 180
intervention planning 25 GRADIOR (personalised Harley, J.P.Y. 94
participation in group sessions computer-based CT programme) Hausman, C.D. 46
165–9, 186–95 93–104 Hawkins, D. 46, 138
peer support and befriending background and overview 93–7 Haworth, D. 212
schemes 226–8 development 97–9 Heal, H.C. 42–3
pros and cons of early methods and applications 99–102 health promotion initiatives 15, 18
interventions 51–2 case examples 99–102 medication effects and falls
psycho-educational interventions modules and components 98 prevention 53–4
186–95, 201–8, 211–20 Grady, C. 53 protocols and reviews 62–3
family counselling programmes 22 Graff, M.J.L. 22–3 see also group-based
Feil, N. 136 Graham, J.E. 22 psycho-educational
Felling, E. 214 Graham, N. 187 interventions
Ferri, C. 116 Grandparent’s Book (Pedersen and Hébert, R. 186–7, 195
Ferris, S. 89 Taylor-Smith 1995) 171 Heller, K. 223
Finnema, E. 67, 202 Green, A. 14, 187, 213 Heller, L. 15
Fisher, M. 176 Grol, R. 219 Heller, T. 15
Flannery, R. 67 Groom, F. 224–5 Henderson, A.S. 175
folic acid 53 group CST (Cognitive Stimulation Herbert, R. 212
Folkman, S. 187, 202 Therapy) 21 Hill, R.D. 66, 75
Folstein, M.F. 47, 100, 111, 191 group-based interventions, general Hillier, V.F. 204
Folstein, S.E. 47, 100, 111, 191 considerations and practical hobbies 61
Forbat, L. 175 advice 26, 138–9, 166, 177–8 Hock, C. 94
Ford, G.R. 195 group-based memory therapies Hodgson, S. 156, 158–9, 165
France 106–13 Hoffman, M. 94
funding and service provisions 12 aims and rationale 107–8 Hogan, B.E. 223
use of cognitive stimulation case examples 111–12 Holthe, T. 116
therapies 81–90 content and course sessions home-based interventions, early
Franco, M. 97, 103 108–11 intervention studies 51
free recall 88 selection of individuals 111–13 House, J.S. 222
Freeman, M. 100 group-based psycho-educational The Hull Drop-in Memory Centre
Friedell, M. 20 interventions 186–95 166–72
From Grandmother with Love (Pettigren background and rationale 188–90 The Hull Memory Clinic 55–67
and Woodin 1992) 171 context and overview 186–8 background and programme
frontal lobes, potential deficit methods and outcomes 190–4 contexts 51–2
problems 59 group-based psychotherapy 21, illustrative case studies 58–62,
funding for services 135–44 64–5, 67
as percentage of GDP 12 general considerations 138–9 intervention rationale 52–5
as percentage of health budget 12 person-centred care approaches ‘prevention’ and health promotion
see also resource allocation 136–8 initiatives 53–5
study to evaluate effectiveness protocols and programmes
140–3 basic overview 55–6
Gallagher, C. 117 case examples 141–3 cognition-orientated activities
Gallagher-Thompson, D. 46, 136, 187 group-based reminiscence work 63–6
Garland, J. 140 156–9, 165–9 family carer support 62
Gaugler, J.E. 212 case examples 168–9 information giving activities
General Health Questionnaire 204 guidelines 169–71 56–62
Generalised Self-Efficacy Scale practical considerations 166 promoting control and
(GSES) 225 session contents 167 pleasure 63
Gerber, G.J. 181–2 group-based support sessions see men’s promoting general health 62–3
Germany, use of art therapy with support groups promoting social and
dementia 146–54 Guest, C. 191–2 pleasurable activities 66
Gibson, F. 156, 167 guidelines specific activities
Gibson, G. 54, 179 for early diagnosis and recognition face recognition programmes 65
Gillard, J. 170 19 question and answer sessions
Gilleard, C. 224–5 for life-story and collage work 60–1
Gilliard, J. 42, 52, 55, 141 169–71 use of cognitive maps 58–60,
Gillies, B. 17, 31 for memory CR interventions 77 62
Gillon, R. 40 Gwilliam, C. 42 use of memory aids 63–4, 65
Gitlin, L. 52 use of Seattle Depression
goals of intervention seepersonal Protocol 66
outcomes Hachinski, V. 53 workshops for families 56–7,
Goffman, G.E. 16 Hagen, I. 116–17 67
Goldberg, D.P. 204 Haggerty, A. 137 Hultsch, D.F. 21, 24, 53
 Index 237

Husband, H.J. 42–4, 46 Kopelman, M. 168 criteria for inclusion 203

Koschera, A. 14, 187, 213 evaluation and research 203–4
Kosloski, K.D. 194–5 implications for future research
Iliffe, S. 14, 18–19, 175, 177, Kuypers, J. 213–14 207–8
212–13 methods and applications 204–7
implicit memory 82 case examples 206–7
in-home occupational therapy services LACLS (Large Allen Cognitive Level memory activities
22, 23 Screen) 111 cognitive rehabilitation 64–5,
incidence of dementia 12 Landauer, T.K. 94 73–8, 93–4
individualised approaches 23–6, 202, De Lange, J. 202 elaborating information and
212–20 Lavoie, J.P. 187 link-making 75
information giving Lawrence, L. 158 errorless learning techniques 75
use of cognitive maps 58–60, 62 Lawton Scale 100 expanding rehearsal techniques 75,
use of ‘question and answer’ Lawton, M.P. 100 76
sessions 60–1 Lazarus, L.W. 225 maximising cognitive strengths
use of workshops 56–7 Lazarus, R.S. 187, 189, 202 65–6
see also group-based Lees, K. 26, 175 prophylactic cognitive
psycho-educational Lévesque, L. 188 rehabilitation 63–4
interventions Levy, R. 177 use of computer-based techniques
initiating activities, problems and Liberman, R.P. 189 93–104
difficulties 59, 61, 62 Liebmann, M. 147 use of mnemonics 75
Innes, A. 23 life review work 21, 158 memory aids 63–4, 65, 76, 93–4
intensive communication methods 20 collage work 158–61, 163–4 see also assistive devices
Interactive Multimedia Cognitive creating story books 159–63, memory assessments 98, 100–1
Stimulation (IMCS) programmes 169–71 post-test protocols 55–67
95–6 Linden, W. 223 selection for group therapies
INTERDEM 23, 29, 32 link-making activities 75 111–12
interventions for early dementia see Little, A.G. 74 use of Autobiographical Memory
early psychosocial interventions Lobo, A. 100 Interview (AMI) 168–9
Ireland, funding and service locating lost items 119 memory clinic studies 51–68
provisions 12 Lodgson, R. 66 background 51–2
Isaacs, R. 146 logical memory deficits 89 illustrative case studies 58–62,
Italy Lories, G. 97 64–5, 67
funding and service provisions a Lushene, R.E. 224–5 intervention rationale 52–5
12 Luszcz, M. 75 ‘prevention’ and health promotion
use of carer-focused Lutzky, S.M. 186–7 initiatives 53–5
psycho-educational support protocols and programmes
groups 186–95 basic overview 55–6
item locating devices 119–30 McAfee, M. 137 cognition-orientated activities
McCabe, L. 23 63–6
McCurry, S.M. 66 family carer support 67
Jacoby, R. 177 McDaird, D. 186–7 information giving activities
Jagger, B. 159 McEvoy, C.L. 107 56–62
James, A. 51 McHugh, P.R. 47, 100, 111, 191 promoting control and pleasure
Jané-Llopis, E. 66 McKitrick, L.A. 94 63
Jansen, A.P. 18 MacGregor, K. 147 promoting general health 62–3
Jarvis, K. 158–9, 161, 169 Macijauskiene, J. 23 promoting social and
Jerusalem, M. 225 Macofsky-Urban, F. 186–7 pleasurable activities 66
Jeste, D, V. 104 Magni, E. 188 specific activities
Joling, K.J. 18, 22 Mahony, F.I. 100 face recognition programmes
Jones, K. 141, 170 Malec, J.F. 94 65
Jonsson, L. 116 The Man Who Mistook His Wife for a question and answer sessions
Josephsson, S. 75 Hat (Sacks) 67 60–1
mandala drawings 150 reminiscence with couples in
Manthorpe, J. 14, 175, 177, 182, group sessions 165–9
Kahn, R. 222 212, 220 use of cognitive maps 58–60,
Kang, J. 212 Marshall, A. 137 62
Karlsson, T. 75 Marshall, M. 116 use of life story books 159–63,
Katsuno, T. 17 Marshall, V.W. 213 169–71
Keady, J. 15, 178 Mason, E. 175 use of memory aids 63–4, 65
Kendrich, T. 212 Matthews, C.G. 94, 97 use of the Seattle Depression
Killick, J. 147, 158 Meadows, G. 147 Protocol 66
Kipling, T. 46 medication-induced problems, falls 54 use of collage work 158–61,
Kitwood, T. 40, 107 Meeting Centres Support Programme 163–4
Knapp, M. 23 201–8 workshops for families 56–7,
Knight, B.G. 186–7 background and rationale 201–3 67
timing of interventions 54–5
238 Early Psychosocial Interventions in Dementia

memory deficits Nadal, E. 43 person-centred care, and group

in early dementia 74 Naidoo, J. 52, 55 interventions 136–8
associative memory problems Najarian, B. 223 personal outcomes 24–5
89 National Dementia Strategy 15 personalised psychosocial
delayed recall problems 88 Neal, D. 147, 158 interventions 23–6, 202,
logical memory problems 89 Neely, A.S. 66 212–13
verbal fluency problems 88–9 Netherlands Primary Carer Support Programme
rehabilitative activities 64–5, 73–8 family counselling programmes 22 211–20
building on remaining memory funding and service provisions 12 Persoon, J.M.G. 214
74–6 in-home occupational therapy 22 Petersen, R. 86
compensating for problems 76 primary care case management 18 Pettigren, J. 171
Memory Diary (Short 1993) 171 neuro-protective measures 53 Piccolini, C. 107
memory group therapy 106–13 Neuropsychiatric Inventory (NPI) Pierzchala, A. 18
aims and rationale 107–8 191, 193, 204 Pillemer, K. 226
case examples 111–12 newspaper reviews 84 Pinquart, M. 63
content and course sessions NICE/SCIE guidelines (2006) 19 Pistrang, N. 175, 223
108–11 Nicholson, L. 29 planning support interventions 25–6
selection of individuals 111–13 night lights, automatic devices A Pocket Book of Memories (Sheppard
memory lapses, and anxiety 44 119–30 and Rusted 1999) 171
memory training 73–8 Nobili, A. 188 Portugal
computer-assisted programmes Nolan, M. 178 early diagnosis issues 19
93–104 Noon, J.M. 223 funding and service provisions 12
problems and remedies 96–7 normalisation and social integration Positive Caring Programme 223–6
men’s support groups 174–84 measures 63 Pratt, R. 26, 28
background and rationale 174–6 Norris, A. 140, 156, 160, 165, 175 prevalence of dementia 12
developing gender specific groups Novak, D.H. 40 ‘prevention’ strategies 53–5
178–84 Novak, M. 191–2 Price, E. 182
Meyers, B.S. 41 Nutbeam, D. 52, 54 Primary Carer Support Programme
Miesen, B.M.L. 28 211–20
Mild Cognitive Impairment (MCI) background and rationale 211–14
21–2 occipital lobes, potential deficit evidence and theoretical basis
four ‘at risk’ functional domains problems 59 213–14
88 occupational therapy services, methods and applications 214–19
‘prevention’ strategies 53–5 home-based interventions 22, 23 case examples 216–18
use of cognitive stimulation O’Connor, D.W. 213 problem-solving activities 85
(CS) 81–90 Oken, D. 40 Procter, L. 51
Millan-Calenti, J.C. 225 Olin, J.T. 100 prompts and cues 65, 76
Mills, M. 175 Oliver, D. 54 prophylactic cognitive rehabilitation
Milne, D.L. 223 Onder, G. 21, 30 63–4
Mini Cognitive Examination 100 Opie, J. 213 protocols for intervention 55–6
Mini Mental State Examination Orani, M. 63 psychological and social support
(MMSE) 100, 140, 191 O’Reilly, S. 117 aims and tasks 30–1
Mitchell, R. 147 orientation activities 63–4, 84 guidelines 30–1
Mittelman, M.S. 18, 22, 195 Ory, M.G. 188–9 psychosocial interventions for early
mneumonics 75 O’Shea, E. 117 dementia see early psychosocial
Mohs, R.C. 100 Otteson, O.J. 195 interventions
Moise, P. 15 psychotherapeutic group work see
Moniz-Cook, E.D. 16–18, 21, 22, group-based psychotherapy
24, 27–9, 30–1, 51–67, 158, Page, S. 15 public awareness campaigns 19–20
170, 172, 179, 213 Palmer, K. 88 public health promotion initiatives see
Montgomery, R.J.V. 194–5 Panza, V. 94 health promotion initiatives
mood assessment tests 100, 180 Parahoo, K. 13 Purandare, N. 53, 63
for carers 191–2, 193, 224–5 parietal lobes, potential deficit Pusey, H. 187
mood problems problems 59 Pynoos, J. 212
and early interventions 51–2 Parker, J. 147
use of gender-specific support Pattee, J.J. 195
groups 176–84 Patterson, R.L. 107 Quality of Life and Management of
use of psychosocial group therapies Patton, M. 124 Living Resources programmes
135–44 Paykel, E.S. 189 115
Moos, R.H. 202 Peacock, E.J. 225 Quayhagen, M. 77
Moriarty, J. 220 Pearce, A. 175 Quayhagen, M.P. 77
Moss, P. 14, 17 Pearlin, L.I. 214 ‘question and answer’ sessions 60–1
Moyes, M. 158–9, 161, 165 Pedersen, J. 171 Quinn, R. 18
Müller-Spahn, F. 94 peer support and befriending schemes
Murphy, C. 156–9, 161, 165, 182 226–8
Murray, J. 186–7 Penhale, B. 157 Rabins, P. 213
My Life Story (Short 1993) 171 Radolf, L.S. 225
 Index 239

Rainsford, C. 26, 175 selecting interventions see choice of disclosure issues and concerns
Randeria, L. 26 interventions 40–3
reality orientation see Cognitive semantic categorisation techniques 84 guidelines 30
Stimulation Therapy (CST) Senesi, B. 189 individual coping strategies 43–5
recall techniques 84 Seron, X. 97 potential interventions 45–8,
Reever, K.E. 51 service interventions for early 51–67
rehersal techniques 94 dementia see early psychosocial support measures seecarer-focused
rehersing activities 75 interventions psycho-educational support
Reifler, B.V. 177 service provisions groups; Meeting Centres
relaxation therapies 21 specialist medical professionals 12 Support Programme; men’s
‘Remembering Yesterday, Caring see also establishing supportive support groups; support around
Today’ reminiscence project 156 services diagnosis
reminiscence therapies 22, 156–72 Sheppard, L. 147, 171 Sweep, M.A.J. 116
background and overview 156–9 Shipway, E. 158 Swindle, R.W. 223
collage work 158–60, 163–4 Short Sense of Competence Szwabo, P. 46
couples participation in group Questionnaire (SSCQ ) 215
sessions 165–9 Short, P. 171
life story books 159–63, 169–71 Sica, C. 192 Takahasi, K. 63
repetition and dementia 151 SIGN (Scottish Intercollegiate Talking About Memory Coffee Club
repetitive practice techniques 94 Guidelines Network) 19 28
reserve capacity theories see ‘cognitive signposting 20 Tamura, J. 63
reserve’ Simon, C. 212 targeting frameworks for intervention
resource allocation Sinason, V. 136 27–9
competing approaches 15, 23 Sitzer, D.I. 104 Tárraga, L. 95, 102
cost benefit analysis 23 Skowronski, J.J. 22 Taylor-Smith, A. 171
respite care 201–2, 212, 219 Smartbrain (IMCS programme) 95–6, telephones, assistive devices 119–30
Reynolds, D. 15 102 temporal lobes, potential deficit
Rice, K. 42 Smits, C.H.M. 24 problems 59
Rich, J.B. 73–4 Snyder, L. 139, 176 temporal orientation activities 84
Richards, D. 187 social activities 61 Teri, L. 22, 26, 46, 53, 66, 136, 177
Richards, K. 52, 158–9, 170 dealing with embarrassment 61 Thoits, P.A. 223
Ridley, C. 147 dealing with ‘shame’ feelings 44 Thommesen, B. 195
Rivermead Behavioural Memory Test normalisation and integration Thompson, A. 28
(RBMT) 112 measures 63 Thompson, C.P. 22
Robertson, I. 97 social support theory 222–3 Thompson, L.W. 46, 187
Romero, B. 146–7 Social Therapy (Milne) 223 Thrower, C. 137
Rosen, W.G. 100 Solomon, K. 46 TIA’s (transient ischaemic attacks)
Rosewarne, R. 213 spaced retrieval techniques 63–4, 75, 60–1
Rossor, M.N. 146 94 time keeping, assistive devices
Roth, M. 100 Spain 119–20
Rowlands, J. 18 early diagnosis issues 19 Tokoro, M. 63
Russell, V. 51 funding and service provisions 12 Topo, P. 116
Rusted, J. 171 spatial orientation activities 84 ‘tribal stigma’ 16–17
Ruxton, S. 178 Spector, A. 53, 81, 86 Truax, P. 66
Spielberger, C.D. 224–5 Tsu, V.D. 202
‘spoiled identity’ concepts 17 Tuokko, H.A. 21, 24, 53
Sabat, S. 52 State-Trait Anxiety Inventory (STAI) Twamley, E.W. 104
Sabin, N. 51 224–5 Tyler, J. 147
Sacks, O. 67 Stern, Y. 18
Sahakian, B. 89 Stevens, A.B. 75
Sainsbury, L. 179 stigma issues 15–16 Validation therapy 136
Sandman, C.A. 77 constructs and concepts 16–17 van Dijkhurzen, M.I. 175
Scheier, M.F. 192 current attitudes and approaches van Hout, H. 212
Scherder, E. 53 17–20 van Tilburg, W. 202, 205
Schneider, L.S. 100 European comparisons 18–20 vascular risk factors 53
Scholey, K. 136 Stokes, G. 136, 163, 170 Vassilas, C.A. 42
Schooler, A. 214 Stress Appraisal Measure (SAM) 225 verbal fluency deficits 88–9
Schreiber, L.S. 94 stress–appraisal–coping model 214 Verhey, F. 88
Schulz, R. 188–9 stress–coping/adaptation theory Vernooij-Dassen, M. 12, 14–15, 16,
Schwarzer, R. 225 187-8 18, 22, 172, 188, 202, 211,
Schweitzer, P. 22, 156–9, 165, 168 see also Adaptation-Coping Model 213–15, 218
Scoltock, C. 13 strokes 60-1 Versey, R. 89
Scott, A. 175 Suitor, J.J. 226 Vidal, J.C. 86
Scott, J. 26 supplements see vitamins and Visser, P. 88
The Seattle Depression Protocol 66 supplements visual hallucinations 67
secrecy and concealment 44 support around diagnosis 39–48 visual and verbal cues 65, 76
aims and tasks 30
240 Early Psychosocial Interventions in Dementia

Vitamin C 53
vitamin E 53
vitamins and supplements,
neuro-protective 53
voluntary sector interventions 222–8
Positive Caring Programme 223–6

Walker, W.R. 22
Waller, D. 147, 159
Waring, J. 26, 175
Warner, M. 13
Warner, N. 42
Watkins, B. 141–3
websites, overview of interventions 35
Weintraub, J.K. 192
Wenger, C. 174–5
Wenz, M. 146–7
Wernicke’s area, potential deficit
problems 59
White, V. 175
Wilcock, J. 212
Wilkins, S.S. 225
Williamson, G.M. 188
Willis, J. 52, 55
Wilson, B.A. 74, 112, 168
Wilson, P. 147
Wimo, A. 116
Win, T. 54
Winblad, B. 116
Wind, A. 19
withholding information 40–1, 42–3
Wong, P.T.P. 225
Woodin, M. 171
Woods, B. 13, 156
Woods, R.T. 18, 24, 46, 66, 74,
76–7, 107, 136, 158–9, 170,
220
Woolham, J. 116
workshops for families 56–7
World Health Organization 158
worries and fears, at diagnosis 43–4

Yale, R. 46, 137

Yalom, I.D. 143

Zanetti, M. 86–7
Zanetti, O. 75, 188, 195
Zarit, J.M. 51
Zarit, S.H. 25–6, 51, 189