A Loved One with Dementia Insights and Tips for Teenagers

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British Library Cataloguing in Publication Information Available

Library of Congress Cataloging-in-Publication Data

Names: Rawitt, Jean, 1952– author.

Title: A loved one with dementia : insights and tips for teenagers / Jean Rawitt.
Description: Lanham : Rowman & Littlefield, [2021] | Series: Empowering you | Includes
bibliographical references and index. | Summary: “This book addresses the challenges teenagers
may face when a family member has dementia. It offers valuable information and support, with
stories from young adults themselves and interviews with adults who know and care for people
with dementia”— Provided by publisher.
Identifiers: LCCN 2020029322 (print) | LCCN 2020029323 (ebook) | ISBN 9781538136980
(paperback) | ISBN 9781538136997 (ebook)
Subjects: LCSH: Dementia—Patients—Family relationships. | Dementia—Patients—Care. | Parent
and teenager.
Classification: LCC RC521 .R39 2020 (print) | LCC RC521 (ebook) | DDC 616.8/31—dc23
LC record available at https://lccn.loc.gov/2020029322
LC ebook record available at https://lccn.loc.gov/2020029323

The paper used in this publication meets the minimum requirements of American National
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Z39.48-1992.
 CONTENTS

Cover
Half Title
Title
Copyright
Contents
You Are Not Alone

PART I: WHAT IS DEMENTIA

1 What Is Dementia?
2 What Does Dementia Look Like?

PART II: EXPECTATIONS AND CHALLENGES

3 What to Expect
4 What You Can Do to Help Someone with Dementia
5 How Does Dementia Affect Family and Friends?
6 Activities to Share with Someone with Dementia

PART III: WHAT’S NEXT?

7 Facing Death and the Rituals of Death and Mourning
8 How You Can Help Yourself during Difficult Times
Notes
Resources
Bibliography
About the Author
 YOU ARE NOT ALONE

W hat is dementia? Let’s start at the beginning. “Dementia is a disorder

in which mental functions break down. It grows worse with time. It
features personality change, confusion, and lack of energy. Thinking,
reason, memory, and judgment are affected.”1 “Dementia is a nonreversible
decline in mental function.”2 “Worldwide, around 50 million people have
dementia. . . . Every year, there are nearly 10 million new cases. . . . The
total number of people with dementia is projected to reach 82 million in
2030 and 152 in 2050.”3
These facts explain very simply the definition and statistics that make
dementia an important subject to be aware of. But why a book about
dementia for teenagers?
First, because with more people marrying and having children later in
life than in previous generations, and with the advances in medical care and
general health allowing people to live longer lives, it is more likely than
ever that young people will find themselves in close relationships with
people who have dementia.
Second, because there is an important role teens can take in helping to
improve the lives of people with dementia. This plays out not only in the
direct contact teens may have with people experiencing cognitive decline,
but also how the world deals with people with dementia and how teens can
help shape that in a positive way.
Dementia can be a frightening and overwhelming disease, both for the
person who is traveling through the downward stages of its path and their
family, friends, and community. Because many people do not understand
what dementia is and why and how it affects a person, it often causes
embarrassment, stigmatization, or mistreatment. It can be so distressing that
it causes people to become withdrawn from social contacts and can leave
friends and relatives uncertain about how to behave with their loved one
who has the disease or reluctant to acknowledge or accept the realities of
the deterioration it can cause.
There are many ways in which you can create or continue to have a
meaningful, beneficial, and even joyful relationship with someone who has
dementia. Even though there is currently no cure, and even knowing that
dementia is a terminal illness, you can develop and maintain a loving and
positive interaction that can be deeply fulfilling and leave you with a
feeling of gratification for having given of yourself to someone who truly
needs that gift.
I was lucky to have two adoring and adored grandparents. They both
lived into their late 90s, and until nearly the very end of their lives, they
lived in an apartment together just blocks from where I lived with my
parents and brothers. The Grands, as we called them, were our babysitters
when we were young, and when we were too old to need babysitting, they
were still very much active in our lives.
As we all got older, the tables turned, and they were the ones needing
care. When I learned to drive, I helped by taking them grocery shopping.
Little by little, they needed more and more help with things, and I loved to
do what I could to help them. But by the time Grampa was in his late 90s, it
was clear that he was confused and behaving in very disruptive ways, and
my Gramma could no longer take care of him in their apartment. With our
help, they moved to a nursing home, and we all hoped they’d make a good
adjustment.
That was not to be the case. Grampa went into a downward spiral and
died only a few days later. Gramma lived another year, at first making a few
friends and enjoying some activities. But one night, waking up confused,
she tried to get out of bed, fell, and broke her hip, and even though she had
surgery to repair it, she never recovered.
I loved them. They lived good and long lives, but the ending was sad.
Looking back, my mother and I realized not only how confused and
disoriented Grampa had become, but also how Gramma, even though she
managed to cover up a lot, had also deteriorated mentally over the last few
years. We felt that we should have realized that sooner, and if we had,
perhaps we could have done something that would have helped.
Our story is not unusual, but the impact it made on me was life-
changing. By the time my grandparents died, I was already well along in a
career I loved. One of my colleagues was an elderly gentleman who had
already retired once, only to return to his old office to take on small projects
and mentor the younger staff and share his expertise. I adored him, learned
from him, and enjoyed his company enormously. But one day he suffered a
stroke at work, and then he, too, began to experience a cognitive decline
(decline in his mental skills). I visited him often, but it was sad to watch
him lose his abilities in small increments.
Not long after his death, I decided to step away from my career. With
time on my hands, I applied to become a volunteer at my local hospital.
When the director of volunteers asked where I would like to work, I
answered, “I’d like to work with geriatric patients.” Her answer came
quickly: “Wonderful! No one wants to work with older patients!” And so
began a second career.
Since that time, I have always been involved, in some way, in the care
of the old. Some have been my own family, some have been my friends,
and some have been strangers who became dear friends. Taking care of
them, being involved in their lives as they grew frail, lost their physical
abilities, and, in many cases, lost their cognitive ability, their ability to
think, remember, and even recognize me or know who they were
themselves, has been an emotionally draining but enormously gratifying
part of my life. In some ways, it is terrifying—because I know, from close
and intimate experience, what might happen. But I have also learned that
the best way to face the fear is to learn as much as I can about whatever it is
that scares me. With dementia, I knew that I needed to learn as much as I
could about it and then let myself experience the difficult emotional roller
coaster that loving someone with diminishing cognition becomes.
Throughout this time, however, I knew that I was deeply grateful to be able
to bring joy, attention, and love to these people, even when they no longer
knew who I was. They made my life infinitely richer and more meaningful,
and were always a source of creativity and inspiration.
Our population is growing older, and people are living much longer than
they used to. Many people are starting families later, so that their children
are growing up with older grandparents, as well as older parents. While
advances in medicine have, in many ways, enabled people to live longer
and healthier lives, a growing number of people will experience some form
of dementia in their later years.
While there are no cures at this time for most, if not all, forms of
dementia, there are many things we can do to help people deal with its
effects, understand how best to confront it, and be generous and useful to
those who experience it. We can learn ways to entertain those whose minds
are no longer able to process information as they used to. We can discover
ways to soothe and comfort the frustrations, anxieties, and even anger of
those whose minds are slipping. There are physical things we can do, ways
we can learn to communicate better, and ways to interact more effectively
with those who have lost the abilities they once had. And we can find ways
to help those who feel they have lost their sense of purpose and usefulness,
which is so necessary to making life worthwhile.
Al, a young man who watched his grandmother’s years-long decline
from Alzheimer’s disease, put it simply: “It’s great to have things to do,
great to have ways to provide comfort. But because there’s nothing you can
fix, you can just really be there. That’s all they really want.”
Dealing with someone who has dementia—no matter how much you
care about them—can be very difficult and affect you in many ways.
Because it is a disease that profoundly changes the person you know,
changing their behaviors, moods, memory, physical abilities, and abilities to
care for themselves, it can cause many mixed emotions in the people who
care about them. It can—very often at the same time—create feelings of
confusion, guilt, avoidance, and frustration, as well as acceptance,
compassion, and deepening love. Caring for someone with dementia can
require a bottomless pool of patience and strength, but it can be a source of
equally deep gratification. It can be a time that requires a great deal from
you, but because of the nature of the illness, we know that it will have a
definite end point.
Having a family member with dementia also profoundly affects the
family dynamic. The stress of caring for their parent can cause your parent
to be on edge, short-tempered, and even depressed. It can cause strain on a
marriage; it can put the burden of extra tasks and responsibilities on family
members—not only the immediate family, but also the extended family. It
can cause financial burdens, and it can cause feelings of guilt. Knowing
how this disease can affect an entire family and thinking about it and
learning ways to respond in helpful rather than negative ways can help ease
some of the tension.
Even more basic than the practical things teenagers can do when dealing
with someone with dementia, there is one important point to keep in mind:
For many, if not most, older people—whether cognitively intact or in
cognitive decline—seeing a bright, cheerful, young face, whether that of a
dear family member or a yet-to-be-known friend, lifts their mood. Having a
young person visit, whether engaging in conversation or an activity, or just
sitting with them—being “in the moment” with them—has the power to
ease loneliness, lighten a depressed mood, distract them from pain or
sadness, and bring them back into the world they may feel they are leaving
or have left. This is a huge gift that you can bring. It can be almost magical,
and it requires no tools, no special knowledge, no experience, just
willingness and a smile.
Most importantly, by understanding more about the illness and our
feelings about it, and learning what we can do to help, we can be better
prepared to handle and empathize with the changes our loved ones
experience as they journey along the path of cognitive decline. Even more,
we can learn to appreciate them for who they are, and who they continue to
be, despite the changes we see. As Carey Mulligan, actress and
spokesperson for the Alzheimer’s Society, reminds us, “Those with
dementia are still people, and they still have stories and they still have
character, and they’re all individuals and they’re all unique. And they just
need to be interacted with on a human level.”4
Young people have the power to positively impact the lives of
individuals with dementia, as well as help others understand why that is
both possible and important to do. Teens can be ambassadors to that
unfamiliar territory; they can help destigmatize the disease, advocate for
those with the disease, and help change the way their friends, their
community, and even the greater society look at and deal with people with
dementia. So, my message to you is, learn all you can, open your heart, and
bring light to those who are facing the darkening world ahead.

NOTE TO THE READER

Throughout this book, I have chosen to illustrate suggestions or
anecdotes by writing about “your grandmother” or “your grandfather.” I
recognize that the person with dementia in your life may not be a
grandparent or even a relative. They may be a family friend, a neighbor,
or someone with whom you work or for whom you volunteer. To keep
things simple and straightforward, I have chosen to refer to that person
most often as your grandparent. Consider it an homage to my own
Grands.
To the many adults and professionals who offered their stories,
wisdom, knowledge, and expertise, thank you for your support and
information. To the many young people who opened up to me about their
experiences loving or caring for someone with dementia, thank you,
thank you. Your honesty and generosity in talking with me about your
feelings, concerns, fears, and questions helped shape this book and—I
hope—give life and color to a very tough subject.
 PART I
WHAT IS DEMENTIA?
 CHAPTER ONE

WHAT IS DEMENTIA?

Dementia is the loss of cognitive functioning—thinking, remembering, and

reasoning—and behavioral abilities to such an extent that it interferes with
a person’s daily life and activities. These functions include memory,
language skills, visual perception, problem-solving, self-management, and
the ability to focus and pay attention. Some people with dementia cannot
control their emotions, and their personalities may change. Dementia
ranges in severity from the mildest stage, when it is just beginning to affect
a person’s functioning, to the most severe stage, when the person must
depend completely on others for basic activities of living.1

S ir Terry Pratchett, world-renowned author of the Discworld series,

wrote of his own experience with dementia: “It’s a nasty disease,
surrounded by shadows and small, largely unseen tragedies. People don’t
know what to say unless they have it in the family.”2
Some people describe the changes in memory that take place in
dementia as being like Swiss cheese, with different-sized holes perforating
the memory like the holes in the cheese. Others liken it to a chalkboard, in
which whatever is written on the board continually gets erased from the
bottom up. Whatever the picturesque description used to describe the
memory loss of dementia, there is no question that it is devastating and has
an impact on every aspect of daily life.
 What dementia is not, is a normal part of aging. Although, as people
age, muscles grow weaker, bones may become more brittle, and people tend
to slow down, they do not necessarily fall victim to the progressive
cognitive losses of dementia. They may think or process information more
slowly than when they were younger, and they may occasionally forget
things, but for many people, while those issues might be frustrations of
daily life, they do not signal the more profound, inexorable, and debilitating
onset of dementia. The most significant factor in the difference between the
changes of normal aging and symptoms of a disease is when the cognitive
issues interfere with a person’s ability to function in daily life.
Most cases of dementia are diagnosed after age sixty-five; however, it is
not solely a disease of old age. Some two hundred thousand cases of
dementia per year occur in people in their 40s or 50s; these are generally
considered cases of early-onset dementia. Therefore, while it can occur in
middle-aged people, most cases are seen in people of more advanced age.
Although Alzheimer’s disease may be what most people think of when
they think of dementia, as it accounts for about 60 to 70 percent of cases,
there are other forms of dementia. In addition to Alzheimer’s disease, these
include vascular dementia, Lewy body dementia, and fronto-temporal
dementia it is possible for someone to have more than one of these at the
same time. The causes and symptoms of these forms of dementia are
somewhat different, but symptoms can include, in addition to memory loss,
changes in personality and behavior, losses in language, confusion, and
changes in sleep patterns. People may also experience dementia as a result
of a side effect of medication, a vitamin deficiency, or a thyroid condition;
luckily, these forms of dementia are generally reversible if treated
appropriately.3 Drinking too much alcohol; suffering a head injury; or even
emotional issues such as stress, anxiety, or depression can cause memory
problems that look like dementia but clear up if the issues are treated.4
True dementia, however, is not yet curable. While there are some
treatments that have been shown to help slow the progress of the disease in
some people and there are some medications that can help ease some of the
symptoms, at this time there is no known cure. Scientists throughout the
world are working on many different approaches to finding a cure because
dementia is a devastating problem worldwide. Some exciting areas of
research that scientists are working on include developing new drugs that
may target the causes of dementia, exploring the impact of inflammation on
the development of dementia, and studying how dietary or caloric
restriction may serve as a way to either prevent or slow the course of the
disease.
While finding ways to prevent, slow, or cure the progress of
Alzheimer’s disease and other forms of dementia is tremendously
important, until ways to do that are found, it is also vital to find better ways
to care for people with dementia on a daily basis. Much research is being
done to find ways to improve the quality of life for people with dementia,
including in such areas as environmental design, personal care, individual
decision-making, how certain words and language can impact feelings of
isolation and stigma for people with dementia, and even how virtual reality
can be used to help improve the quality of life for people with advanced
dementia.

OPPORTUNITIES TO PARTICIPATE IN RESEARCH

The National Institute on Aging supports research at major medical
institutions through the Alzheimer’s Disease Research Centers (ADRCs).
Scientists at the ADRCs are working on finding a way to cure—or even
prevent—Alzheimer’s disease, as well as ways to improve diagnosis and
care for people with Alzheimer’s disease. There are opportunities through
the ADRCs for people—both healthy individuals and people with
symptoms of the disease—to participate in research studies. In addition,
there are support groups for patients and families.5 The National Institute on
Aging provides information on the ADRCs nearest to where you live and
links to helpful resources (https://www.nia.nih.gov/health/alzheimers-
disease-research-centers).

HATTIE’S STORY: HOW A YOUNG WOMAN BECAME

INVOLVED IN DEMENTIA RESEARCH
Hattie has always been drawn to community service, volunteering
through school programs even as a young girl. When she was in middle
school, she joined an after-school program called Sweet Readers, which
trains middle-school students to engage with older people with dementia
 in art projects as a way to enhance and expand intergenerational
connections and understanding. After participating in the Sweet Readers
program for a year, Hattie decided she wanted to continue working with
people with dementia and volunteered at a neighborhood senior center
that had a daycare program for people with moderate to severe dementia.
“I had never been with people who were nonverbal or who could no
longer move, so that was a whole other level of interaction for me, and I
found it tremendously rewarding,” Hattie said.
And, later in the summer, I started doing my research into Alzheimer’s disease and
dementia—reading scientific articles and whatever I could find to understand the disease
more. When I had the opportunity to attend a two-week summer program in Cambridge,
England, I ended up turning my interest into a presentation project for my course in social
psychology. At first, I was going to do a project on the aging population, but then I
decided just to change it to dementia because I wanted to focus more specifically on that.
After that program finished, I realized I wanted to learn even more about dementia.
Since then, I’ve been researching on the weekends, and I’m now working on a website
where I want to post articles, write a blog, and inform people about the disease. It’s a
huge challenge, but I feel that there’s so much I want people to know, especially about
how isolating the disease is and how things can improve for people with dementia.
I still have to finish high school, but I know I want to go into a field like neuroscience,
or geriatrics, or some other area of science where I can expand this interest. For now, I’m
just reading all I can about it.

There are also indications that certain lifestyle changes can help prevent
the onset of diseases like Alzheimer’s. The benefits of increasing physical
activity, reducing hypertension (high blood pressure), and engaging in
cognitive training (brain exercises) as a preventative against dementia are
exciting and promising areas of research, as well as ways in which
individuals can take some control over their continuing health.6

A PROFESSIONAL’S ADVICE: LEARNING ABOUT THE

DISEASE WILL HELP YOU COPE WITH IT
Grace, a social worker who works with people with dementia and their
families, often meets with families who are dealing with dementia. Her
perspective was sensible and straightforward.
 The more you know, the better able you will be to deal with the
effects of the disease. There can be so much frustration and anger,
and a tendency to take things personally when you don’t understand
the disease. When you aren’t familiar with it, you might think that
the person with dementia is acting out or saying things to spite you,
that they’re doing it to make you mad. But if you learn a little bit
about what’s happening in the brain of someone with dementia, you
realize that their social restraints may be lost, and their coping
strategies are not there anymore. If you’re able to think about
putting yourself in their shoes and can ask yourself, for example,
“How would I react if someone I didn’t recognize walked into my
house and tried to take off my clothes?” you begin to realize what it
might be like and why you’d lash out, or yell, or struggle. But it’s
possible to learn how you can better approach someone, to learn a
calming approach, how it’s important to always introduce yourself,
that it can be valuable to talk about the past, things that someone
was interested in, whatever reaches them still; these are things you
can learn that will help you both. You will find that even through the
fog of dementia, you can find a way to connect that’s meaningful
and rewarding.

According to the World Health Organization, nearly 50 million people

throughout the world have dementia, and there are almost 10 million new
cases each year. The proportion of people age sixty and older living with
dementia is 5 to 8 percent of the global population. It is estimated that the
total number of people with dementia worldwide will reach 82 million by
2030, and 152 million by 2050.7 The financial costs are tremendous, and the
emotional and social toll is unmeasurable. Dementia, therefore, presents an
enormous burden not only on the individual with dementia, but also on their
families, caregivers, and communities—and on the entire global health
system.