Alzheimer's early stages First steps for family, friends and caregivers

Daniel Kuhn

Book - 2013

This third edition of Alzheimer's Early Stages offers the 5 million individuals diagnosed with the disease and their loved ones and caretakers new research findings, new approaches to treatment, and new information on the three key areas of Alzheimer's disease: medical aspects, day-to-day care, and care for the caretaker. Author Daniel Kuhn has been a social worker and educator focused on enhancing the well-being of people with Alzheimer's disease and other dementias, as well as that of their families, since 1987. Alzheimer's disease has a beginning, not just an end; and as with all beginnings, one must take the first steps before one takes the last. The problems encountered early in the disease and the advice required t...hen are very different from what is needed later in the disease. This book enlightens us about these early stages. Daniel Kuhn seeks to replace fear with knowledge, in the hope that knowledge will lead to empowerment. What does the disease look like and feel like when it first occurs? What types of problems are encountered first by the person with the disease, and by their family and friends? How can these problems be dealt with most effectively? This book is also about reversing the dehumanization that unfortunately is now associated with Alzheimer's disease. Although the disease should be feared and respected, it is not a cause for embarrassment or shame.... This book will serve as a discussion tool to encourage open and frank discussions about mild Alzheimer's disease among patients and family members. In Part One, readers learn about the medical aspects of Alzheimer's through descriptions of diagnosis and the progression of the disease from its earliest origins, and explanations of the current and proposed medical treatments. This section also describes potential non-drug means of treating the disease, such as physical exercise, and speculative treatments, such as coconut oil, that are gaining popularity yet are not.

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2nd Floor 616.8311/Kuhn Checked In
Alameda, CA : Hunter House Inc., Publishers [2013]
Main Author
Daniel Kuhn (-)
Third edition
Physical Description
xv, 296 pages ; 22 cm
Includes bibliographical references (pages 264-284) and index.
  • Part I: What Is Alzheimer's Disease?
  • The Need for an Accurate Diagnosis What Is Normal in the Aging Brain? How Alzheimer's Disease Changes the Brain
  • What Research Says About Its Origins Getting an Accurate Diagnosis The Value of a Diagnosis
  • Symptoms of the Early Stages of Alzheimer's Disease What Is Recent Memory?
  • Beginning Signs An Emerging Pattern Other Troubling Symptoms One or More Symptoms Sometimes Present
  • Mood and Behavioral Changes
  • Progress in Treatment and Prevention of Alzheimer's Disease
  • Current Medical Treatments Progress in Treatment and Prevention
  • Participating in Clinical Drug Trials and Other Studies
  • The Limits of Medicine
  • Alternative Therapies What Do Risk Factors Tell Us?
  • Physical Exercise Brain Games Diet and Supplements
  • Buyer Beware
  • Balancing Activity and Relaxation
  • Part II: Giving Care
  • What Is It Like to Have Alzheimer's Disease?
  • Common Experiences and Feelings
  • Varying Degrees of Awareness of Symptoms
  • The Importance of One's Social Environment
  • What Some Family Members Have to Say
  • How Relationships, Roles, and Responsibilities Change
  • Accepting the Diagnosis
  • Stepping into the Leadership Role
  • When Your Partner Has AD
  • When Your Parent Has AD
  • Telling Others About the Diagnosis Involving Others in Care
  • Making Practical Decisions
  • Ensuring Safety on the Road Maintaining Good Health
  • Ensuring Financial Well-Being
  • Alternative Living Situations for the Person with AD
  • Doing the Right Thing
  • Improving Communication
  • Communication Difficulties
  • Redefining Your Relationship
  • Ways of Listening and Talking with a Person with AD
  • Whose Problem Is It?
  • Helping a Person with AD to Plan for the Future
  • Finding the Time Legal Considerations
  • Financing the Cost of Care
  • Rethinking the Living Situation Finding the Right Professionals
  • Keeping a Person with AD Active, Happy, and Healthy
  • The Elements of Well-Being
  • Selecting Appropriate Activities
  • Traveling Participating in Social Events
  • Reminiscing
  • Spiritual and Religious Practices
  • Being Around Pets and Plants
  • Involving Children
  • Part III: Caring for Yourself
  • Self-Renewal for Family and Friends
  • Listening to Your Body and Mind
  • The Importance of Grief Work
  • Individual and Family Counseling Exploring Spiritual Resources Keeping a Journal
  • Maintaining a Sense of Humor
  • Obtaining the Help You May Need
  • Using Community Resources
  • Participating in a Support Group
  • Using Help at Home Choosing an Adult Day Center
  • Learning More About AD
  • Voices of Experience
  • Questions and Answers
  • Lessons Learned
  • Epilogue: Advocating for Change
  • The Politics of Health Care
  • Our Aging Society and Youth Culture
  • Personal Change
  • AD Research Centers in the United States Funded by the National Institute on Aging
  • Print and Video Resources
  • Resources on the Web.

From the Introduction: Why the Third Edition of this Book? The first edition of this book was published in 1999, shortly after the first drug treatments for Alzheimer's disease were developed, primarily for people in its early stages. Although these new drugs were imperfect, there was much hope for further medical improvements. The second edition of this book was published four years later, when promising research was believed to be paving the way toward dramatic breakthroughs and a world without Alzheimer's disease. That hope has since given way to the harsh reality that Alzheimer's disease is far more complex than most scientists had imagined.... Nevertheless, advances have been made in understanding the origins of the disease, and identifying ways to diagnose, treat, and prevent it.... This book is intended to serve as a beginning guide for family members and friends of people in the early stages of Alzheimer's disease -- after symptoms emerge. Although many fine books about Alzheimer's disease have been published, this was the first one written exclusively about its early stages, and it will hopefully continue to be a valued resource for everyone confronting this disease. The latest medical information about the disease is explained, including new definitions about the disease itself, new diagnostic techniques, as well as current and proposed treatments. Whenever possible, all facts are supported by solid, evidence-based research. Whenever the research evidence is weak or nonexistent, such limitations are duly noted. Practical advice about coping with the disease now and help in planning for the future are also offered. This advice is based on my professional experience over the past 40 years working with individuals and families affected by Alzheimer's disease. My overall goal is to shed light on the concerns of family members and friends who are newcomers to this troubling disease. They hold the key to enhancing or detracting from the quality of life of those who are diagnosed. If you have a relative or friend who has recently been diagnosed with Alzheimer's disease, this book aims to help you deal with the challenges at hand. Also, if you know someone who is having difficulties with memory, thinking, language, and other brain functions, I hope this book will encourage you to seek help for that individual. Delaying a diagnosis often leads to needless frustration for all concerned.... The beginning of Alzheimer's is a critical time to develop a philosophy of care and ways of coping that will promote a good quality of life both for the person with the disease and for family and friends. Once you are armed with the information and advice offered in this book, hope and self-confidence can replace worry and fear. Becoming familiar with the disease in its initial stages will also help you to prevent or minimize crises later on.... I have been privileged to hear the stories of thousands of individuals with the disease, and those of their relatives and friends.… An important lesson I have learned is that there is no single right way of coping. Therefore, this book is not a step-by-step guide to the "correct" or "best" way to manage the inherent challenges of this disease. Rather, throughout this book I address general principles about coping strategies and offer specific suggestions. Whenever possible, I rely on the experiences of people living with Alzheimer's disease to illustrate key points.... How this Book Is Organized The first part of this book concerns the medical aspects of Alzheimer's disease. Information about basic medical facts will help you to begin dealing with practical everyday issues. Although these chapters are full of facts about diagnosis and treatment, you should not be too concerned about absorbing these details right away.... A solid medical understanding of Alzheimer's disease is useful, but the challenge to live a good quality of life with the disease is far more difficult to master. Ways to promote a good quality of life for both you and the diagnosed individual are central to this book. Part 2 addresses day-to-day concerns including the emotional, social, legal, and financial effects of the disease on you, on your family and friends, and, above all, on your loved one with the disease. Understanding your changing roles and responsibilities in relation to the person with the disease is central to this undertaking. Part 3 specifically addresses how to best take care of yourself as you care for your loved one with Alzheimer's disease. Achieving a balance between your needs and the needs of the person with the disease is key to coping successfully. The epilogue lays out an agenda for change in public policy concerning research into the treatment and prevention of Alzheimer's disease.… Finally, there is a resource section that will help you learn more about the disease now and as it progresses over the coming months and years. A note about the title of this book: Although the book is primarily concerned with caring for people with Alzheimer's disease, the ideas presented here may well apply to individuals and families coping with many other irreversible brain disorders, also known as dementia. The term early stages refers to the fact that the disease unfolds over many years, perhaps decades as new research shows. My use of the word stages is an attempt to indicate that you will face different challenges along the continuum of the disease. Also, I have avoided using terms like patient, victim, or sufferer, and instead refer to "people" with Alzheimer's disease. Maintaining one's dignity and status as a whole person in the face of this dehumanizing disease is perhaps the greatest challenge for everyone involved.... ====================================== From Chapter 1: The Need for an Accurate Diagnosis It is evident that we are dealing with a peculiar, little-known disease process. -- Alois Alzheimer, 1906 ... A century ago, an American's average life span was forty-nine years, but now it has reached seventy-six. What accounts for this dramatic change in longevity that has resulted in an aging boom today? As a society we began to believe that life-threatening diseases could be treated, cured, and prevented. Improvements in public health during the past century altered our expectations. Lifestyle changes and medical breakthroughs have made a long life a reality for the average person in developed countries. In other words, there is no need today to think that disabling conditions associated with aging are "normal" just because they are commonplace. Such a shift in our thinking and our medical technology has spawned a large and growing "anti-aging" movement in health, fitness, and medicine. What Is Normal and Abnormal in the Aging Brain? Forgetfulness is a universal human experience. For most of us, forgetting something represents nothing more than a temporary inconvenience, since usually the forgotten bits of information are trivial. Although advancing age typically brings about minor changes in memory, thinking, and other brain functions, most older adults tend to compensate quite well for these changes. And although older people may generally be more forgetful than they were in their younger years, this level of forgetfulness usually does not interfere with the overall quality of their lives. This condition is referred to as "benign forgetfulness." Although the majority of older people experience this minor problem, the scientific basis for this change late in life is not yet completely understood. Although most people aged sixty-five years and older experience a slight decline in memory and other brain functions, less than 15 percent decline in significant ways. Older people may occasionally complain about forgetting names or misplacing things around the home. They may also notice these incidents occur with greater regularity as they age. These moments of absent-mindedness do not seriously affect one's lifestyle and may simply be an exaggeration of forgetfulness experienced by everyone, regardless of age. Most of these people would perform very well on tests of memory and thinking if medically evaluated. At first glance, age-related forgetfulness may appear similar to the forgetfulness associated with Alzheimer's disease (hereafter referred to as AD). If this is the case, then what exactly is the difference between these two states, one considered a normal part of aging and the other a sign of disease? There is currently no single test available that provides a clear answer to this basic question. A diagnosis of AD cannot yet been made with a simple biological test and requires that certain "clinical" criteria be met, based on one's symptoms such as memory loss worse than expected for one's age. Advances in brain science are offering important insights into the differences between AD and earliest stages of the disease. It is now commonly understood that memory loss and other cognitive impairments can be traced on a continuum between "normal" and "disease" -- differences are merely a matter of degree. For someone who is actually experiencing memory problems, however, there is a notable difference between mild memory loss that is merely annoying and severe memory loss that disrupts one's life. ============================================== From Chapter 2: Symptoms of the Early Stages of Alzheimer's Disease "I know that I have a problem, but it doesn't bother me. If you're going to have it handed to you, you have got to take it, anyway. So that is the way I look at it." -- Glenn Campbell, country music star, diagnosed with Alzheimer's disease What Is Recent Memory? The type of memory affected by AD is generally called "recent memory." A person whose recent memory is impaired typically forgets events that took place within the past hour, day, or week. Entire episodes or fragments of an episode cannot be recalled because new learning does not occur or is disrupted. Recent memory is quite different from remote memory, which involves events, places, or people from the distant past and often remains intact in the early stages of the disease. For example, a person with AD may not be able to recall what she had for breakfast today but may well recall the details of a high school prom some sixty years earlier. The ability to perform personal-care tasks such as dressing and bathing usually remains intact too. Lots of abilities may be well preserved at this stage whereas other abilities may be impaired. There is great variability among affected people in how the disease is first manifested and progresses over time, although impairment of recent memory is the common feature. Beginning Signs As noted in the first chapter, what is commonly referred to as the early signs of AD do not actually mark the beginning of the disease but are the first observable and persistent signs. At this point on the disease continuum, the threshold between MCI and AD has been crossed, although that turning point is largely a judgment call by a physician. Most family members of a person with AD are able to recall unusual incidents that occurred months or years before a loved one was diagnosed with AD. They may have dismissed these warning signs as nothing more than eccentric behavior or as a normal part of the aging process. Only when a pattern emerges over time are these strange incidents put into the proper perspective. The case of former President Ronald Reagan is typical in this regard. ================================================ From Chapter 3: Treatment and Prevention of Alzheimer's Disease Every complex problem has a solution that is simple, neat, and wrong. -- H. L. Mencken In this chapter I will review current options for treating AD as well as some options that may become available in the future for treating, slowing down, and preventing the disease. At present, there is nothing available to stop or reverse symptoms. A handful of drug treatments are available that are modestly effective in improving symptoms and slowing down the progression of AD, but not in all cases. Better drugs may be on the horizon. These include drugs that are in testing phases at research centers and clinics, mainly in North America, Europe, and Japan. And although claims that certain herbs and dietary supplements may enhance memory have not yet been substantiated, some alternative medicines may also prove beneficial. Excerpted from Alzheimer's Early Stages: First Steps for Family, Friends, and Caregivers by Daniel Kuhn All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.