The Alzheimer's Family Helping Caregivers Cope

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To my family: Linda, Stephen, and Elizabeth

“The family is one of nature's masterpieces.”

—George Santayana
 CONTENTS

Acknowledgments
Introduction

Chapter 1: The Alzheimer's Family

Chapter 2: Memory Loss and Dementia: Understanding the Basics
Chapter 3: Facing the Problem
Chapter 4: The Long Journey
Chapter 5: Maintaining a Connection
Chapter 6: Safety Issues
Chapter 7: Dealing With Mood and Behavioral Issues
Chapter 8: Caregiver Stress
Chapter 9: Long-Term Care
Chapter 10: The End of the Journey: New Beginnings

Appendix: Pharmacologic Treatment of the Cognitive, Functional,

and Behavioral Symptoms of Alzheimer's Disease
Readings & Resources
Index
 ACKNOWLEDGMENTS

Many people have been extremely helpful to me in creating this

volume. First, I would like to thank Charles (Andy) Anderson, whose
generous donation in memory of his wife spawned the creation at
Dartmouth of The Jeanne Estee Mackay Anderson Alzheimer's Disease
Support and Education Fund. The Anderson Fund has given me the
opportunity to focus my work more comprehensively on the needs of the
Alzheimer's family. This book is a direct result of that opportunity.
I would like to thank Caroline Moore and the rest of her staff at the
Dartmouth-Hitchcock Aging Resource Center. They have been wonderful
colleagues and aids throughout this process. They have also become an
invaluable presence for Alzheimer's families throughout New Hampshire
and Vermont.
I would also like to thank Kesstan Blandin, PhD, the Upper Valley
Program Coordinator for the Alzheimer's Association of Massachusetts and
New Hampshire. Dr. Blandin's intelligence, kindness, and tireless work
with Alzheimer's families have been a source of wonderful inspiration and
valuable learning for me.
In addition, I wish to thank Erin Onstad, a graduate student at the
Dartmouth Institute for Health Policy and Clinical Practice, for her
assistance with issues related to Alzheimer's care in the assisted living
setting.
I have learned much about Alzheimer's disease from medical texts and
scholarly articles, and from conferences, seminars, lectures, and other
professional educational resources. But my most valuable learning, by far,
has come from the many Alzheimer's individuals and families I have had
the privilege of knowing over the past four decades. I have cared for many
of these in my clinical practice; others have attended the various
Alzheimer's support groups I have facilitated. We have struggled together
with the many difficult issues that arise in this terrible disease. Mere words
cannot convey how thankful I am to those Alzheimer's families who taught
me so much—not only about the disease and its impact on families, but
about the enormous strength of the human spirit in the face of terrible
adversity.
I would also like to thank Andrea Costella Dawson, Vani Kannan, Karen
Fisher, and the rest of the editorial staff at Norton who helped get my ideas
into an organized, readable, and hopefully useful format. In particular,
Andrea Costella Dawson's wisdom and intelligence have been outstanding,
surpassed only by her patience and tolerance when, all too often, other
professional activities pushed this work to the side.
Finally, there were many weekends when my involvement with The
Alzheimer's Family competed with my involvement with my own family. I
want to thank them, again, for their forbearance. We are all glad for the
completion of this volume. I do hope it will be interesting, informative and
useful. Although I have emphasized how many different people have been
helpful along the way, I am solely responsible for any errors of commission
or omission.
 INTRODUCTION

ALZHEIMER'S: THE DISEASE OF THE 21ST

CENTURY

A generation ago, cancer was looked upon with great fear, as an

incurable death sentence. People talked about it in hushed tones, afraid to
utter the “C word” because of the extreme reactions it produced. While
cancer is still dreaded, there has been much progress in its treatment, and
some forms of cancer are now seen as a chronic illness to be managed.
Along with significant advances in care, the stigma associated with the
disease has declined, and the condition is much more openly discussed in
the public arena.
In the 1980s, AIDS began to replace cancer as the most feared disease in
the minds of many. To a great degree, this had to do with the lack of
effective treatments initially, and it was—accurately—seen as inevitably
fatal. AIDS (like most cancers, certainly) remains an extremely serious
condition, of course, but as effective treatments have been developed, some
of the extreme fears of the disease and the stigma associated with it have
begun to lessen.
Now, it would appear that Alzheimer's disease is becoming the illness that
people—particularly those at or beyond middle age— fear the most.
Although Alzheimer's disease can occur earlier in life, it is primarily a
disease of the aged. Overall, about 13% of persons over age 65 have
Alzheimer's disease. At age 65, however, only about 2% suffer from the
illness. However, every 5 years, the percentage of persons with the disease
doubles, so that by 70, nearly 5% have it; at 75, about 10% of the
population, and at 80, at least 20%. By 85, some 40% of those still living
meet criteria for Alzheimer's disease (Alzheimer's Association, 2011).
 Males and females seem to be affected at approximately the same rate,
but since a greater number of older females are alive than males, more
women than men are living with the disease. According to The Shriver
Report: A Woman's Nation Takes on Alzheimer's (2010) about two thirds of
people with Alzheimer's disease are women. And women comprise about
60% of the care-givers.
Alzheimer's disease is a type of dementia (about which more later); it is
the most common cause of dementia by far. According to some studies,
Alzheimer's disease, by itself or in combination with another form of
dementia, accounts for as much as 75% of all cases of dementing illness.
However, other forms of dementia often present very similar issues to the
family, in terms of the nature of symptoms and the effects on the caregiver.
In many ways, from the caregiver's perspective, there may be more
similarities than differences among the different forms of dementia. Thus,
while this book primarily concerns the Alzheimer's family, much of the
content is also relevant to family members of people with other types of
dementia. Other common dementias include the following:
• Vascular dementia
• Mixed dementia
• Dementia with Lewy bodies
• Dementia of Parkinson's disease
• Frontotemporal dementia
For simplicity's sake, and because it covers the vast majority of persons
with dementia, the primary caregiver and other family members of the
patient are referred to as “the Alzheimer's family,” but in many cases the
phrase “the dementia family” might be an appropriate substitute.
While most people with Alzheimer's develop the illness in late life (the
late 60s and older), it can begin much earlier, in the 40s, 50s, or early 60s.
Fortunately, this is uncommon—less than 4% of those with Alzheimer's
disease have early onset (starting before age 65). Having early-onset
Alzheimer's disease adds another level of tragedy and an even greater
burden to the person with the disease, and the family. While this book
primarily addresses the issues surrounding Alzheimer's that begins in later
life, much of it applies to early-onset families as well.

A GROWING CRISIS AS THE POPULATION AGES

 Alzheimer's disease is a growing crisis. As the baby boomers— that large
cohort of individuals born in the years immediately following World War II
—enter their 60s, in the coming decades the numbers of persons with the
disease will increase significantly. It is estimated that, if no cure or
prevention is developed, 13-15 million people will have the disease by
2050, due to the increased numbers of elders in the population (Alzheimer's
Association, 2011). Worldwide this is true as well, and numbers of cases are
rising most rapidly in developing countries, which have the fewest
resources to care for those with the disease. This is not because Alzheimer's
is spreading like a virus or other communicable disease, but simply because
there are increasing numbers of older people with each passing year.
The diagnosis of Alzheimer's disease is often considerably delayed, for a
variety of reasons, including the gradual onset of the disease, the subtle
nature of the early symptoms, and the time and expertise it takes for a busy
physician to take the history and perform the necessary office tests. In
addition, the stigma surrounding the disease and denial on the part of the
individual and family can significantly delay diagnosis. However, delaying
a diagnostic evaluation for a significant period of time after the onset of
symptoms means that the family and patient are subjected to a great deal of
unnecessary stress and uncertainty about what is wrong with the individual
who is becoming deeply forgetful, having greater and greater difficulties
functioning, and perhaps having significant changes of personality. This
“pre-diagnostic” phase of the illness is usually extremely difficult for the
person with the disease and for the family. Many questions go unanswered;
blame and anger are often plentiful; and increasingly dangerous behaviors
can occur. Delaying diagnosis delays the opportunity for families to plan for
their future based on knowing what lies ahead. Finally, a significant delay
in diagnosis means that pharmacologic treatment gets put off until a great
deal more irreversible damage has occurred. While our current medication
treatments for Alzheimer's disease are modestly effective, at best, it does
seem clear that starting treatment earlier in the disease leads to better
outcomes rather than waiting unnecessarily.
Once a diagnosis is finally made, patients and family members generally
feel a deep sense of sadness and a variety of other unpleasant emotions, of
course; but there is often a feeling of relief, as well, now that they know
what they are dealing with. The anxiety surrounding the symptoms actually
goes down once a diagnosis has been made.
 When one person has Alzheimer's disease, many are affected. According
to the Alzheimer's Association, for every person with the disease, at least
four individuals' lives are deeply touched by the illness. Usually there is a
primary caregiver, often a spouse or an adult child, who bears the major
responsibility of caring for the individual with the disease. However, other
caregivers are frequently involved also—as well there should be: this is too
big a job for just one person. Whether or not other family members play a
significant role in providing assistance or monitoring for the person with
Alzheimer's, all family members are involved and affected to a greater or
lesser degree, including the nuclear family and often the extended family as
well. It includes those who live with the patient, those who live nearby, and
even those who live some distance away. Alzheimer's stresses the entire
family. This disease can bring into bold relief the enormous strengths of
families when confronted with a crisis. However, it can also bring to the
surface vulnerabilities and unresolved conflicts—problems that tend to be
ignored or avoided when there are no crises. The disease and its stresses can
even tear a family apart. Such outcomes are not rare and immeasurably
increase the tragedy of the disease itself.

FAMILY: THE CRITICAL LINK

As difficult as it can be for family members to cope with a loved one with
Alzheimer's disease, family members are also the most critical component,
by far, in the network of care for the person with Alzheimer's. It is clear that
caregivers and other family members who are very knowledgeable about
the illness, who understand and have come to terms with their own
emotional reactions to the situation, who feel understood and supported in
their care-giving decisions, and who have learned to effectively balance the
needs of the person with Alzheimer's on the one hand, and their own needs
on the other, will cope with this overwhelming task much more effectively.
They have a greater sense of emotional well-being, feel less burdened, and
have an enhanced ability to continue the process without becoming
demoralized or burned out. Frequently, this leads to the loved one with
Alzheimer's doing significantly better in a number of important domains, as
well.
A CLINICIAN FOR THE PRIMARY CAREGIVER AND
OTHER FAMILY MEMBERS
Someone who has Alzheimer's disease needs to be cared for by a
physician who is expert in making the diagnosis and treating the disease
and the various complications throughout its course. Likewise, the
Alzheimer's family—the primary caregiver and other family members who
are involved—will benefit enormously from the opportunity to work with
someone who understands the profound impact of this disease on the
family, and the impact of the family on the person with the disease, and can
serve as a guide and aide throughout this very difficult journey. This volume
has been written for such professionals. Throughout this book, these health
care professionals are referred to simply as clinicians. This includes
physicians, psychologists, social workers, psychotherapists, counselors,
care managers, case workers, nurse practitioners, and the staff of senior
centers, senior care agencies, and long-term care facilities.
It is hoped that this volume will help these clinicians better understand
the impact of the disease on the family, and the impact of the family on the
disease. It should give clinicians the tools they need to help families cope
more effectively, for their own health and emotional well-being, and for the
sake of the person with the disease. It will help clinicians understand the
unique stresses faced by members of the Alzheimer's family. It provides a
great deal of information about the disease itself and what particular
challenges to expect in the various stages of the illness. It suggests
therapeutic approaches and other strategies for addressing these issues in
ways that will help family members understand and cope with the
symptoms and behaviors of the patient, as well as to understand and cope
more effectively with their own emotional and psychological reactions to
this difficult situation. In addition, it will help clinicians to identify and treat
family members who are especially distressed by the disease and to be
helpful in cases where the disease has created (or brought to the surface)
family conflicts and disagreements that add significant additional stresses.
Well-informed clinicians can also assist with some of the difficult decisions
that regularly arise in the care of persons with Alzheimer's.
How, exactly, do these clinicians become involved in caring for family
members of persons with Alzheimer's disease? In some cases, a clinician
may already be caring for the person with the disease, and recognizes the
importance of helping the family as well, for their own sake and the sake of
the patient. In other cases, a clinician may be working with someone whose
family member has just been diagnosed with Alzheimer's disease. A
clinician may work in a practice setting in which the person with
Alzheimer's disease is treated primarily by a neurologist or other physician,
and family members are routinely or selectively seen by another (often non-
MD) clinician on the team. Or a family member may independently, or by
referral, seek treatment from the clinician to get help in coping with this
disease in a loved one.
However the connection is made, it is increasingly common that
clinicians are called upon to work with family members of Alzheimer's
patients. And because of the enormous impact of the disease on the
caregiver, and the equally great impact of the caregiver on the person with
Alzheimer's, it is critical that clinicians working with family members have
a thorough understanding of the disease and the myriad ways in which
family members are entwined in it.
Alzheimer's disease is a long and difficult journey. Family members who
are unfortunate enough to have to take this journey do need a guiding hand
through the process. It is hoped that this book will provide clinicians with
the information and the tools they need to effectively serve in that role.
CHAPTER 1
The Alzheimer's Family

UNDERSTANDING THE ALZHEIMER'S FAMILY

Alzheimer's disease is, indeed, a family illness. Just as the illness affects
individuals differently, depending on many factors including their
premorbid personality or character, the disease affects families in different
ways depending, to a great degree, on the character of the family. To
understand the impact of the disease on a particular family, it is critical to
have a good understanding of their dynamics. It is important to know, for
example, what the power relationships in the family were before the person
became ill. For example, has there been a great deal of mutuality between
husband and wife, or did one tend to dominate the other? When the
dominant member of a couple is the one to develop the disease, difficulties
are almost inevitable, as it becomes harder and harder to dominate when
one is demented. The dominated spouse has almost always been harboring
resentments about this issue, and those resentments tend to come to the
surface one way or another, once the illness has developed, if they haven't
before that point. One of the first tasks of the clinician working with a
member of the Alzheimer's family is to learn as much as possible about the
relationship prior to the illness.
Couples who have not talked with each other a great deal about their
feelings during their marriage are less likely to openly discuss the illness
and its impact on both of them, although this is vital in coping with it, for
both the victim and the spouse. Overall, it is probably obvious that couples
in a strong, mutual relationship with good communication cope with this
illness (and probably most other adversities) better than those who do not
have such a solid foundation.

TASKS OF THE PRIMARY CAREGIVER

 In most situations, a single individual is designated (officially or
unofficially) as the primary caregiver. When there is a living and
cognitively capable spouse, the primary caregiver is nearly always this
person. Many seniors feel it is their obligation to care for a spouse, no
matter how difficult the task might be, and do not want their adult children
to be burdened with it. Also, some spouses (or other primary caregivers, for
that matter) do not let others help because they want to remain in complete
control of the situation. This inevitably creates tension with other family
members. And there are times when the spouse does not take very active
control of the situation and another family member needs to take over.
It often seems that a disproportionate amount of the work of caregiving
falls onto the shoulders of the primary caregiver, while other available
family members are often much less involved. This can create a difficult
situation for all concerned. In general, the most effective caregiving
situations are those in which the primary caregiver has extensive, regular
assistance from others, welcoming the help without ambivalence when it is
available. The primary caregiver may perform the majority of the tasks, but
has regular periods off duty, when others care for the person with
Alzheimer's. Indeed, the best outcomes occur when caregiving is a
responsibility shared among several family members, all of whom willingly
participate in the tasks of care.
What is caregiving? For purposes of this volume, caregiving is defined as
all of the activities someone does to supervise or assist the individual with
Alzheimer's disease. What are the typical tasks involved in caring for
someone with Alzheimer's disease? To a great degree, this varies with the
stage of illness and from person to person as well. Nevertheless, it is useful
to consider four different categories of providing care to the person with
Alzheimer's:
• Passive caregiving
• Active caregiving
• Cognitive caregiving
• Behavioral caregiving
Naturally, these tasks overlap considerably, but I discuss them as separate
entities.

Passive Caregiving
 Passive caregiving refers to the need to simply be present in case help is
needed. In mild Alzheimer's disease, this is less extensive than later in the
disease. There is also great variability in how much caregivers feel the need
to provide passive caregiving at different stages of the disease. Some
caregivers are comfortable leaving the person with early Alzheimer's alone
for extended periods, while others feel the need to be with the afflicted
individual nearly all of the time. In addition to the general severity of
illness, this difference may also have to do with the specific behavior
patterns of the person with Alzheimer's. Some people with the disease have
significant apathy and are content to sit (or nap) for long periods of time,
with little activity or contact with others. While this behavioral pattern can
be upsetting to families, particularly in someone who had previously been
quite active, these individuals may require less passive caregiving than
others who are more active and feel a greater need for contact with the
caregiver. A caregiver who is providing passive caregiving may actually do
very little for the person with Alzheimer's but needs to be nearby.
For some spousal caregivers, passive caregiving is not especially
stressful, as it does not require any great change in the relationship. This is
particularly true for older couples who do nearly everything together (even
before Alzheimer's), and seem to be almost joined at the hip. However, for
most caregivers, particularly those who are not spouses, the need to provide
increasing amounts of passive caregiving as the disease progresses is
difficult indeed. These caregivers regularly complain of feeling tied down
or trapped by the situation. It is all too easy for a care-giver to become
resentful toward the person with Alzheimer's for this. The clinician can help
caregivers recognize that it is the illness which demands so much from the
caregiver, and not the loved one. This may seem obvious in the abstract, but
of course it is not always so easy in practice. Clinicians should keep the
refrain “blame the disease, not the person” in mind and use it frequently.
As the disease progresses, of course, the need for passive care-giving
increases; it becomes less and less desirable or even possible to leave the
person alone even for short periods of time. Also, passive caregiving is only
passive until the person with Alzheimer's has a need, at which time active
caregiving is required. While it is possible to separate active and passive
caregiving for the purposes of discussion, in reality caregivers spend their
time providing a blend of both passive and active caregiving, in different
proportions, depending on the person, on the stage of illness, and other
factors.

Active Caregiving
Active caregiving can be further subdivided into (1) role assumption and
(2) assistance with specific tasks.
Role Assumption
Role assumption includes taking over those tasks, or roles, which the
person with Alzheimer's previously performed but is no longer able to do
because of this illness. Most of these tasks are the so-called instrumental
activities of daily living, or IADLs:
• Paying the bills and balancing the checkbook
• Cooking
• Doing minor household repairs
• Shopping
• Operating mechanical equipment such as the microwave or the computer
• Taking medications as prescribed
• Driving
Whether or not it is advisable or safe for a person with Alzheimer's disease
to continue to drive is often very contentious. This subject is discussed in
more detail in Chapter 6. As people with Alzheimer's disease are in the
process of losing their ability to perform IADLs, they usually require
assistance with these tasks to accomplish them. While it may seem that it
would be a simple matter to assist someone with a task, that is often not the
case. Needing to be in control is a common trait among people in general;
not everyone feels it to a great degree, but of course for some it is extremely
important to stay in charge, no matter what. This is seen more commonly
(but certainly not exclusively) in males, and in particular among people
whose careers or lifestyles have involved being in positions of power over
others—executives, career military officers, shop foremen, physicians, and
the like. Generally, the degree to which someone needs to be in control does
not lessen when that person develops Alzheimer's disease; it can even seem
greater than before as the individual struggles with the ability to remain in
charge. Adapting to the disease, which inevitably involves yielding control
of many things, certainly can be challenging. “Control freaks” have a very
difficult time with this aspect of the illness. While he or she may need
assistance with a given instrumental task, a person with Alzheimer's who
needs to be in control rarely recognizes or acknowledges this. As a result, it
can be quite difficult for a caregiver to assist with necessary tasks without
causing a great deal of tension. It is important to recognize, as well, that
while an intense need for control may not be a very helpful or attractive
personality feature in someone who has Alzheimer's, it is usually central to
the individual's sense of self-esteem. This may be why those with
Alzheimer's who have a high need for control do not give it up without a
great struggle. It is not only viewed as an assault on their autonomy but,
more basically, it is felt as an attack on a critical component of their self-
esteem.
One of the major challenges of caring for someone with Alzheimer's is to
find a way to provide increasing amounts of assistance and direction
without making the afflicted person feel diminished in the process. This is
no easy task; the self-esteem of people with Alzheimer's disease tends to be
very fragile. Even (perhaps especially) those who insist that nothing is
wrong with them are usually, on some level, aware that they are not
functioning normally. They may be not only very defensive about it, but on
a deeper level are often anxious, distressed, and feeling very vulnerable
about the changes in mental functioning they have experienced. They may
be very unlikely to acknowledge these feelings (indeed, they may have no
conscious awareness of them) but do need to be treated with this significant
vulnerability in mind.
Individuals may finally give up their attempt to remain in control of a
given activity when they are no longer able to manage any aspects of the
task. At that point, it may become easier for the caregiver to simply assume
full management of the task, but with control-oriented persons, this point is
usually reached only after some difficult struggles.
Assisting With Specific Tasks
Assisting with or taking over specific tasks is the other form of active
caregiving. As the disease progresses, people with Alzheimer's need
increasing amounts of assistance not only with IADLs, as discussed above,
but also with basic activities of daily living (ADLs):
 • Dressing
• Bathing
• Toileting
• Feeding
• Walking
Usually, persons with Alzheimer's lose the ability to perform these tasks
independently after several years of illness, but there can be great
variability. Needing assistance with basic ADLs usually means that a person
has progressed to the moderate stages of illness. The loss of function and
consequent need for assistance is usually gradual. For example, someone
with Alzheimer's disease may gradually lose the ability to select appropriate
items of clothing to wear and the caregiver then needs to assist by making
suggestions about this. This will progress to the caregiver needing to lay out
all of the clothes for the person to wear. As time goes on, assistance with
buttons, zippers, and getting items like shirts and pants on correctly
becomes more and more necessary. Finally, the person with Alzheimer's
may lose all ability to put on clothing, and the caregiver needs to dress the
person entirely.
Many caregivers, particularly elderly spouses, find the physical aspects of
caregiving quite challenging, and if they do not have assistance from other
family members or paid helpers, need to arrange for it by this stage of the
illness. Bladder and, especially, bowel incontinence are extremely difficult
for all caregivers to manage. Bowel incontinence is often a last straw that
leads a care-giver to consider placing a loved one in long-term care.

Cognitive Caregiving
The third type of caregiving, cognitive care, involves the care-giver
serving as an external source of memory and other cognitive functions of
the person with Alzheimer's disease. Since short-term memory impairment
is one of the earliest and most fundamental symptoms of Alzheimer's, this
form of caregiving generally begins earlier than passive or active caregiving
and continues, increasingly, throughout the disease. It usually begins even
before the individual has a diagnosis—sometimes long before. Most
individuals with mild cognitive impairment (often a pre-Alzheimer's
condition that involves deficits in recent memory but no major impairment