The Alzheimer's family : helping caregivers cope

105 Pages·2011·0.52 MB·English

by  Santulli

THE ALZHEIMER'S
FAMILY
Helping
Caregivers
Cope
ROBERT B. SANTULLI, MD
W. W. Norton & Company
New York • London
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 caregivers.
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 caregiving
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,