An essential guide for everyone who provides care for a person with Alzheimer’s disease or other dementias Practical. Easy to read. Comprehensive. Encouraging. Accurate. All of these words describe this indispensable book that belongs in the hands of all family members and other caretakers of people who have been diagnosed with Alzheimer’s disease or other dementias. Dr. Eric Pfeiffer, a physician who has devoted thirty years to patients suffering from all forms of dementia, here distills the wisdom of those years for the benefit of caregivers confronting some of life’s most challenging days. Dr. Pfeiffer’s genuine compassion and wise advice are certain not only to reduce caregiver stress but also to improve the patient’s quality of life. In these pages are specific tips for all stages of caregiving, from the initial realization of the problem through mild, moderate, and severe stages of dementia, and even beyond, when a caregiver begins to resume a full life after the patient’s death. Dr. Pfeiffer identifies specific problems and provides practical solutions. He explains the importance of support groups and many other means of dealing with stressful days. For experienced caregivers and those new to the challenges, this book will be a profoundly useful guide to coping successfully.
About the Author
Eric Pfeiffer, M.D., is Emeritus Professor of Psychiatry and founding director of the Eric Pfeiffer Suncoast Alzheimer’s Center, University of South Florida College of Medicine. He has been repeatedly honored for his work in geriatric psychiatry and is the author of major medical textbooks as well as popular consumer health books. He lives in Tampa, FL.
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Caregiving in Alzheimer's and Other Dementias
By Eric Pfeiffer
Yale UNIVERSITY PRESSCopyright © 2015 Eric Pfeiffer, M.D.
All rights reserved.
What Is a Caregiver?
A CAREGIVER does those things that a sick or disabled person can no longer do independently. In other words, what a caregiver does depends on what that other person needs to have done for him or her, which in turn will depend on the stage or severity of the illness or disability. In some cases, and at some stages of a disease, caregiving may involve only a little bit of help: steadying the person's gait, combing his or her hair, helping with getting dressed or making it to the bathroom on time. In other cases it can be much more involved and labor-intensive, to the point where the caregiver does virtually everything for the other person.
Why Become a Caregiver?
The only reason you would consider becoming a caregiver is that someone near and dear to you needs care and you are the only logical person to provide that care. Why? Because you love that person or are committed to that person in some profound way, most commonly through blood or marriage. Consider what taking on the job of caregiver would mean to you. Don't you have your own life to live? Wouldn't giving up a good part of your own life to take care of another person full-time be asking rather a lot? Indeed it is. So why would you want to become a caregiver?
Nobody Wants to Be a Caregiver
In truth, nobody wants to be a caregiver. The fact that someone dear to you is in need of such care is a painful one to face. You will become a caregiver only because the role is thrust upon you by fate or circumstances, or because of who you are and what is possible for you at this time of your life. So how and why is it that you are even considering this exhausting and often underappreciated job?
There is no law that says you have to be the one who becomes the patient's caregiver. You can decide that it is simply not something you can or want to do, and then someone else will have to take on this task: another relative, a friend, or even a paid care manager. Usually this choice will have to be faced fairly early on in the course of the patient's disease. The fact that you are reading this book seems to indicate that you are seriously leaning in the direction of taking on this role. But remember, it is a choice. You can still change your mind before it is too late.
For my part, I am going to try to do everything possible to help you carry out this choice with skill and elegance, yes, even with joy.
Caregivers Are a Lifeline to Their Patients
Without caregivers, patients with Alzheimer's disease could not find their way to the doctor. They could not accurately provide their own history, neither their medical history nor the history of their lives. And they could not convey the extent of their memory problems nor the behavioral problems that accompany their memory deficits. What caregivers do is vitally important to the patient. Their duties may include preparing meals and giving the patient medications on the prescribed schedule. Above all, they provide emotional support as well as love and affection to the patient. Caregivers also help patients to make decisions or, later in the disease when the patient can no longer participate in decision-making, make decisions on the patient's behalf. Caregivers serve as advocates for the patient, too. They become the guardian angel to the patient, hovering nearby and keeping the patient from missteps or harm. But caregivers should take over only what their patients can no longer do independently, and encourage patients to exercise all the skills they still possess.
Caregivers and Doctors: An Essential Partnership
Caregivers, almost as much as physicians, are decision-makers concerning when patients begin and whether they continue treatment. For this reason it is critical that caregivers understand the nature of the illness as well as the benefits, limitations, and potential side effects of all available treatments. (I will discuss what the currently available treatments can and cannot accomplish in Chapter 9.)
After treatment begins, caregivers must also work with doctors to observe and report beneficial or adverse changes in the patient's response. This is critical since patients may have widely varying reactions to medications. Caregivers are the ones to refill or renew the patient's prescriptions and carry out any other instructions given by the prescribing doctor. Since Alzheimer's disease can last anywhere from two to twenty-five years, doctors and caregivers need to establish a long-term partnership of mutual trust and respect. For this reason I advise that at each visit the doctor and caregiver spend some time with each other away from the patient, so that they both can feel free to raise any issues that would be uncomfortable to discuss in the patient's presence.
Caregivers Assure Patients' Quality of Life
While doctors can diagnose and make treatment recommendations, the day-to-day quality of life rests largely in the hands of the caregiver. Caregivers' efforts to provide continuity, dignity, pleasure, social interaction, a stable environment, and freedom from unwanted surprises make a huge difference in the life of an Alzheimer's patient. In fact, what the caregiver does determines in large part how patients deal with their fate: either calm acceptance of the disease or some form of lashing out against the caregiver and the rest of the world.
Some people are natural-born caregivers. They do all the right things, without instruction. But other caregivers don't know where to start, and may need a lot of help. I am hoping that this book will provide some of the necessary guidance. I want to convey all that I know about the illness, about available treatments, and how to manage disruptive behaviors when they occur. I also want to make you aware that patients with any form of dementia may undergo significant personality changes as part of the illness, changes that will require that caregivers adapt.
At the University of South Florida we have developed a series of caregiver classes to teach family members about the illness, about available treatments and techniques for managing disruptive behaviors, and about available community resources such as daycare and respite care. These classes also teach how to prepare legally and financially for the caregiver experience, with information about durable power of attorney, health surrogate instruments, and living wills. In our caregiver classes we use the natural-born caregivers as teachers and models of care provision. To find caregiver classes in your community, check with your local chapter of the Alzheimer's Association. If no such caregiver classes exist, you might ask your doctor or your memory disorder clinic to start them; participants in our caregiver classes have called them true lifesavers.
Some Caregivers Risk Becoming Patients Themselves
Given the demands and stresses of caregiving, it should not be surprising that some caregivers may become patients themselves, at times succumbing to depression, burnout (sometimes called compassion fatigue), or self-neglect. To minimize the risk of this happening, caregivers need emotional support, recognition, encouragement, suggestions for coping techniques, and information about their role as caregivers. This is an issue of such great importance that I have devoted an entire part of this book to it (see Chapters 17 through 20). But right up front there are a few things that caregivers need to understand and do even before they are involved in the thick of caregiving:
You, the caregiver, must take responsibility for maintaining your own health, mental health, and sense of well-being. Should you fail to do so, you will not be able to provide the care that is needed. Instead your patient will decline more rapidly and possibly require premature admission to a healthcare facility, at great financial and emotional cost.
You need to avail yourself of all the help that may be available to you. This includes joining a caregiver support group in the earliest stages of caregiving, as well as asking for and accepting practical and emotional support from other family members and from your friends.
Keep your patient's doctor apprised of how you yourself are doing, and ask his or her advice for keeping you feeling and functioning well.
The Stages of Caregiving
Just as there are distinct stages of Alzheimer's disease, described in detail in Chapters 13 through 15, there are also distinct stages of caregiving.
Stage 1: Coping with the Diagnosis
Being told that your spouse, mother, father, or someone else near and dear to you has Alzheimer's disease can be a shocking experience. Most people have some idea, accurate or not, of what this diagnosis implies. And none of it is good. Immediately, there are a lot of questions to be answered: What is Alzheimer's disease? How severe is the disease at this point, or at what stage is the affected person? What treatments are available and when should treatment begin? Is Alzheimer's disease inherited? Many more questions will occur to you and you should try to get every one of them answered. Some can be answered by your doctor. For others, a search on the internet is in order: try WebMD.com, for starters. Then read some books on Alzheimer's disease. In addition to the book you are now reading, read The 36-Hour Day by Nancy Mace and Peter Rabins, which has been described as "the bible" on Alzheimer's disease.
Stage 2: Deciding Who Will Be the Caregiver
Figuring out who will care for your loved one is a critical decision for you, for the affected person, and for anyone else considered a candidate for the caregiver role. Caregiving can be done well by other family members, very close friends, or even professional caregivers. Depending on your relationship to the patient, you will need to decide first whether you are the "logical" person to take on this role, and second, whether you are willing and able to do so. If not, you will probably need to find and designate an alternate caregiver.
Stage 3: Caregiving at Home
Caregiving in the patient's home will be the longest and most complicated period of caregiving, as the patient progresses through the various stages of the disease (early, middle, and late). The majority of this book is devoted to serve as a guidebook for this stage of caregiving, though the other stages of caregiving are also very important.
Stage 4: Considering Residential Placement
This stage of caregiving, dealing with the decision to consider residential placement of the patient, is considered in Chapter 16. It can be very difficult emotionally for the caregiver and others in the patient's support network.
Stage 5: Caregiving during Residential Placement
Once the patient has been moved into a residential facility, it may seem at first that the caregiver role has ended or is at least markedly diminished. But this is far from the case. The caregiver's role certainly changes during this transition, but it nevertheless continues in full. Now it involves visiting the patient in the residential setting at regular intervals—perhaps daily, or on another schedule, depending on distances involved and any other commitments the caregiver may have. It still is all about assuring the best care for the patient, only now any number of other people and a whole new organization are involved. Especially in the early phases of residential placement, the patient needs to be assured that you are still involved as he or she adjusts to a whole new environment and to a whole array of new people who will provide care. During this time you may be besieged by demands from the patient to be taken "home." You may also face anger and blame from the patient for having been moved to a care facility, as well as all sorts of requests from facility staff. Please remember that this is a period of transition for everyone involved. The most helpfUl advice for this stage of caregiving may come to you from other members of a caregiver support group who have gone through the same experience, and from the doctor who is caring for your patient. You will find more about how members of a caregiver support group can help in Chapter 18.
Stage 6: Dealing with the Death of the Patient
Eventually your patient will die. During this stage, entirely new feelings of grief, and to some extent feelings of relief, will require special attention. You can read more about this transition in Chapter 19.
Stage 7: Recovering from Caregiving
Recovering from the exhausting role of being a caregiver to a patient with Alzheimer's disease or another dementia involves its own challenges. The transition is so important that I have devoted an entire chapter to this topic; see Chapter 20 when you are at that stage.
1. A caregiver is someone who takes care of another person who is sick or disabled, assuring a good quality of life for that person. The best caregivers offer and provide needed support while encouraging their patients to be as self-reliant as possible.
2. No one chooses to be a caregiver. Caregivers are responding to a situation that demands their attention and help.
3. Caregivers are a lifeline to patients with Alzheimer's and other dementias.
4. Caregivers are vital decision-makers regarding treatment, and are the doctor's partners in implementing a treatment program.
5. If caregivers don't take time to care for themselves, they may be at risk of becoming patients themselves.
6. There are distinct stages of caregiving, each with its own challenges.CHAPTER 2
Different Kinds of Caregivers: Spouses, Other Family, Friends
CAREGIVING can be a very demanding and stressful activity, and because it can last for extended periods of time, you wouldn't want to take it on except for someone you love or to whom you are deeply committed. So for the most part caregivers will provide care only to someone really close to them: a spouse or partner, a sibling, a parent or parent-in-law. Occasionally someone will become a caregiver to a really good friend. In any case, a strong commitment to the person for whom you are going to provide care is absolutely necessary.
I have said that no two Alzheimer's patients are alike and by the same token no two caregivers are alike. For certain purposes, however, it may still be useful to draw some distinctions between different types of caregivers, based on the caregiver's relationship to the person for whom care is provided. Becoming a caregiver to someone changes your relationship to your loved one, depending on what your relationship was before the illness. Thus becoming a caregiver to your spouse differs from becoming a caregiver to your mother or your father.
Spouses as Caregivers
It can be assumed that spouses are very committed caregivers. They may have been together for forty to sixty years and thus have a huge number of experiences in common. At some level they have been caring for each other all along but both spouses have been contributing to this task. Now, however, a major shift in responsibilities is happening, with the patient passing on more and more of his or her household and personal tasks to the other person. While the caregiver for the most part is willing to take on these new responsibilities, there will be times when either the patient or the caregiver will experience anger or guilt over this life change. Caregivers, despite their best efforts, may get angry over the amount of responsibility that has been shifted to them. Or they may experience guilt from time to time, thinking that perhaps they are not doing enough, or that they lost their cool the day before. Patients too may get angry at the caregiver because they are losing prerogatives that they have long enjoyed, or they may feel guilty for burdening the caregiver excessively.
Adult Children as Caregivers
When an adult child takes on the caregiver role, the practical, emotional, and financial aspects of caregiving should be discussed among any siblings, particularly if only one of them is doing the bulk of caregiving. For instance, more than one of the children may contribute financially to the task. Another aspect to be considered in deciding which role each of the adult children will assume is whether any are in a "sandwich generation" situation, in which he or she is still very actively involved in child-rearing activities.
Excerpted from Caregiving in Alzheimer's and Other Dementias by Eric Pfeiffer. Copyright © 2015 Eric Pfeiffer, M.D.. Excerpted by permission of Yale UNIVERSITY PRESS.
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Table of Contents
Foreword Gayle Sierens ix
Part I Understanding the Caregiver Role
Chapter 1 What Is a Caregiver? 7
Chapter 2 Different Kinds of Caregivers: Spouses, Other Family, Friends 20
Chapter 3 Why Alzheimer's Disease Demands Caregiving 28
Chapter 4 Preparing for the "Job" of Caregiving 31
Chapter 5 The Rewards of Caregiving 39
Part II Learning about Your Loved One's
Chapter 6 Milder Forms of Memory Impairment 51
Chapter 7 Understanding Alzheimer's Disease 57
Chapter 8 Advances in Diagnosing Alzheimer's Disease 80
Chapter 9 Alzheimer's Disease Can Now Be Treated 91
Chapter 10 Other Forms of Dementia, and Delirium 100
Chapter 11 The Value of Participating in Clinical Studies 115
Chapter 12 The Future of Research and Treatments 119
Part III Providing Care for Your Loved One
Chapter 13 The Early Stages: A Caregiver in Waiting 127
Chapter 14 The Middle Stages: Patience and Humor 155
Chapter 15 The Late Stages: Even More Challenging 174
Chapter 16 The Hardest Decision You'll Ever Make 190
Part IV Taking Care of Yourself
Chapter 17 Caregivers Need Care, Too 201
Chapter 18 Caregiver Support Groups 215
Chapter 19 When Your Loved One Dies 221
Chapter 20 Recovery from Caregiving 226
Appendix: Resources for Caregivers and Families 247
Acknowledgment s 255
About the Author 267