Role of Caregivers in Dementia Care
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Subhechhya basnetRole of Caregivers in Dementia Care
Uploaded by
Subhechhya basnetRole of Caregivers
In Dementia Care
Dr. Subhechhya Basnet
Resident
Department of Psychiatry
DEMENTIA
Disorder with memory impairment and
at least one other symptom from aphasia, apraxia,
agnosia, or disturbances in executive functioning.
Accompanied by impairment in social and occupational function.
The decline must represent a decline from a previously higher level of
functioning.
Out of the primary dementias, the most common
primary dementia is Alzheimer’s disease (AD).
Dementia with
Lewy bodies (DLB)
Pick’s
disease Other
Primary
Huntington’s Dementias
disease
Prion disorders, including
Creutzfeldt–Jakob disease
Three main stages
• Often lasting for 2 or 3 years
• Failing memory
First stage • Muddled inefficiency over the tasks of
everyday life
• Spatial disorientation
• More rapid progress of intellectual and
personality deterioration and focal
Second stage symptoms
• Aphasia, apraxia, agnosia, and acalculia
• Profound apathetic dementia
• Patient becomes bedridden and
Third or incontinent.
terminal stage • Bodily wasting may be rapid despite
adequate preservation of appetite.
Course and Outcome
• The disease runs a progressive course, with death following some 2–8
years after onset.
• Found significantly shorter survival for those in the pre-senile
category.
• Neither remissions nor fluctuations characterize the disease.
• The worse the cognitive state at presentation, the worse the rate of
subsequent decline.
• Predictors of mortality: aphasia, apraxia, and loss of function.
Statistics and Prevalence
• Someone in the world develops dementia every 3 seconds.
• There were over 55 million people worldwide living with dementia in 2020.
• This number will almost double every 20 years, reaching 78 million in 2030
and 139 million in 2050.
• Already 60% of people with dementia live in low and middle-income
countries, but by 2050 this will rise to 71%.
• The fastest growth in the elderly population is taking place in China, India,
and their South Asian and Western Pacific neighbors.
ADI - Dementia statistics, https://www.alzint.org/about/dementia-facts-figures/dementia-statistics/
(accessed 5 January 2024).
In Nepal, there may be over 135000 people with
dementia. (Oct 31, 2021) assumed to reach 285,000
in 2050.
About 8.8 million Indians older than 60 years live with dementia.
Age-standardized dementia prevalence in India is 8.0%
Dementia is more prevalent among females than males and in rural
than urban areas.
Alzheimer's Dement. 2023 Jul;19(7):2898-2912.
• An estimated 6.9 million Americans are
living with Alzheimer's dementia.
• Seventy-three percent are age 75 or older.
Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and
Figures. Alzheimers Dement 2024;20(5).
Among people age 70, 61% of those with Alzheimer’s dementia are
expected to die before age 80 compared with 30% of people without
Alzheimer’s dementia.
Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and
Figures. Alzheimer's Dement 2024;20(5).
Introduction to Caregiver
Burden
• Caregivers of patients with dementia are essential to their clinical care.
• Caregivers often experience stress due to their caregiving responsibilities
and can be considered the "invisible second patients" in dementia care.
Continuum (Minneap Minn). 2016 Apr;22(2 Dementia):619-25.
The mean burden score for caregivers of dementia patients
was high at 47.7, compared to a mean burden score of 33.6
for caregivers of elderly patients with psychosis.
Spouses had the
highest mean burden
scores of 53.48.
Caregiver burden in dementia was positively
correlated with cognitive impairment and inability
to carry out activities of daily living (ADLs)
Asian J Psychiatr. 2017 Apr;26:86-91
Unaddressed Challenges
Dementia (London). 2014 May;13(3):350-65; J Fam Nurs. 2022 Aug;28(3):243-257; Int Psychogeriatric.
2017 May;29(5):765-776.
Hidden Toll
Res Theory Nurs Pract. 2009;23(3):181-202; Aging Ment Health. 2022 Apr;26(4):709-715
Supporting the Primary
Caregiver
Offering Tailored Caregiver Inclusive Dementia
Assistance Support Wellbeing Clinic Visit Awareness
The Micromanager
Educating Family Members on
Dementia Care
Importance of Family Education
• It improves the overall hospital care experience for people living
with dementia.
• It facilitates more meaningful interactions and person-centered
care in busy hospital settings.
• It provides crucial knowledge and expertise that can enhance the
quality of care.
• It helps ensure that the needs and wishes of people living with
dementia are not overridden.
An ethnographic study. Int J Nurs Stud. 2019 Aug;96:72-81
Effective Communication with Dementia Patients
• Identify and meet the needs of the person with dementia.
• Enhance the quality of care and improve patient outcomes.
• Facilitate person-centered care and strengthen social relationships
Effective Communication Stratégies for Dementia
• Approach the patient from the front
• Face the patient
• Provide cues
• Optimal environment
• Simple language
• Short sentences
• Respect adult communication
Nurs Stand. 2011 Feb 23-Mar 1;25(25):40-6
• Allow processing time
• Let patients complete their thoughts
• Repeat sentence
• Encourage writing
• Utilize pictogram grids
• Using facial expressions
Psycho-Social Changes in Dementia Patients
Behavioral and Psychological Symptoms in Dementia (BPSD)
Medical Management – Early
Start.
Benefits of Early Dementia Diagnosis
• Improved Quality of Life
• Effective Comorbidity Management
• Delayed Disease Progression
• Cost Savings
Br J Community Nurs. 2019 Aug 2;24(8):383-387
Neurology. 2005;64(9):1514; Gerontologist. 1995;35(5):622
Treatment Options
Dementia Medications: Donepezil, Memantine & More, https://www.healthline.com/health/dementia-drugs-
and-medication (accessed 5 January 2024).
Managing BPSD in Dementia
Patients
Non-pharmacological interventions
should always be considered as
the first course of treatment
in BPSD in non-emergent situations.
Non-Pharmacological
Management for BPSD
Dementia Care Centers – How
Can They Help?
Memory Care: Services, Benefits, and Cost, https://www.healthline.com/health/what-is-memory-
care (accessed 4 January 2024)
In Nepal,
• Arogin Care home and day care center
• The Hope Hermitage (आशा कुटिया )
• Nepal Senior Care
Teaching Primary Gatekeepers
In the field of suicide prevention, the term gatekeeper refers to
“Individuals in a community who have face-to-face contact with large
numbers of community members as part of their usual routine”
U.S. Department of Health and Human Services Office of the Surgeon General and National Action Alliance
for Suicide Prevention, 2012
Training programs to
improve dementia
awareness in different
sectors should be initiated.
The First and Last Common Sense:
Preserving Safety and Sanity
Knowing when to step in
Assessing daily activities
Recognizing red flags
Communication strategies
Common Senses of Dementia Care
Independence and Respect:
• Recognize limitations while valuing your crucial role in the patient's life.
• Seek solutions collaboratively by engaging with trusted individuals.
Teamwork:
• Involve primary family caregivers, friends, neighbors, and professional caregivers.
• Establish a collaborative approach to day-to-day care for patients with dementia.
Stick with It! (Routine):
• Emphasize the importance of structure and routine in dementia care.
• Balance routine with diverse activities, incorporating both time and space considerations.
Be Prepared:
• Anticipate and prepare for unexpected events, holidays, and disruptions.
• Create a calm environment with a designated quiet space for overwhelmed loved ones.
Empathy, Education, and
Empowerment
Empathize
Keep yourself updated with the patient’s needs and concerns
Remind yourself of the primary purpose and sustain the courage to
keep going
Plan your day and delegate work for effective functioning to avoid
burnout
Communicate and seek professional help when need
Network with organizations that provide help
Your loved one
will only do
well as LONG
as you are
doing WELL
