Alzheimer's Early Stages: First Steps for Family, Friends, and Caregivers

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The third edition of Alzheimer’s Early Stages offers new research findings, treatment approaches, and information on the three key areas of Alzheimer’s disease: medical aspects, day-to-day care, and care for the caregiver. Daniel Kuhn seeks to replace fear with knowledge. With information on the progression of the disease, potential non-drug means of treatment, the changing world of the diagnosed individual, legal and financial planning, and maintaining physical and mental health for the caregiver, the book ...
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Alzheimer's Early Stages: First Steps for Family, Friends, and Caregivers

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The third edition of Alzheimer’s Early Stages offers new research findings, treatment approaches, and information on the three key areas of Alzheimer’s disease: medical aspects, day-to-day care, and care for the caregiver. Daniel Kuhn seeks to replace fear with knowledge. With information on the progression of the disease, potential non-drug means of treatment, the changing world of the diagnosed individual, legal and financial planning, and maintaining physical and mental health for the caregiver, the book provides detailed guidance and advice while leaving room for adapting to the individual situation.
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Editorial Reviews

From the Publisher

"Kuhn guides families in developing a philosophy of care, offering clear and current information on the nature of the illness ... this is a much needed addition to the Alzheimer's literature. [Recommended] for all consumer health collections."
Library Journal

"[A]n Alzheimer's classic to be sure. A must-have for the well-read persons interested in Alzheimer's Disease."
American Journal of Alzheimer's Disease

"[D]oes a sensitive and comprehensive job of addressing the medical, emotional, and practical concerns inherent in the early stages ... It is a valuable addition to the Alzheimer's literature and Mr. Kuhn is to be commended for this very worthwhile contribution."
Perspectives: A Newsletter for Individuals Diagnosed with Alzheimer's Disease

"This book contains so much of value which could be used to support anyone with a degree of cognitive impairment and it is a book filled with compassion, care and optimism."
— Sian Williams, Net Galley Reviewer

Library Journal
First published in 1999, this valuable guide by the education director of the Mather Institute on Aging (Evanston, IL) remains one of the few books devoted solely to the early stages of the disease. Updated chapters cover the importance of getting a diagnosis, risk factors (including the role of depression), early symptoms, treatment and prevention, and information on physical health, safety concerns, caring for the caregiver, and financial and end-of-life planning-all illustrated with brief, first-person narratives. Of special interest are chapters on relationships, including telling others about the diagnosis, and the fully revised section on current available treatments. New to this edition is a chapter detailing family experiences with memory impairment, which Kuhn compiled from a survey of 1400 caregivers. Intelligently written with numerous references to professional and consumer literature, this book is an excellent choice for Alzheimer's and consumer health collections. Copyright 2003 Reed Business Information.
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Product Details

  • ISBN-13: 9780897936675
  • Publisher: Turner Publishing Company
  • Publication date: 10/8/2013
  • Edition description: Third Edition
  • Pages: 336
  • Sales rank: 286,300
  • Product dimensions: 5.50 (w) x 8.40 (h) x 0.80 (d)

Meet the Author

Daniel Kuhn has been a social worker and educator focused on enhancing the well-being of people with Alzheimer’s disease and other types of dementia, as well as that of their families, since 1987. Through direct service, training, research, consultation, and program development, Kuhn has supported the missions of several nonprofit healthcare organizations in the Chicago area. The author and co-author of more than 50 publications, he has given hundreds of presentations for professional and family caregivers throughout the United States and Canada. Kuhn currently leads a grant-funded project to promote comfort care for people with dementia at Rainbow Hospice and Palliative Care, based in Mount Prospect, Illinois.
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Read an Excerpt

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.

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Table of Contents

Introduction to the Third Edition

Part I: What Is Alzheimer’s Disease?

Chapter 1: 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

Chapter 2: 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

Chapter 3: 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

Chapter 4: 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

Chapter 5: 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

Chapter 6: 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

Chapter 7: 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

Chapter 8: Improving Communication
Communication Difficulties
Redefining Your Relationship
Ways of Listening and Talking with a Person with AD
Whose Problem Is It?

Chapter 9: 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

Chapter 10: Keeping a Person with AD Active, Happy, and Healthy
The Elements of Well-Being
Selecting Appropriate Activities
Participating in Social Events
Spiritual and Religious Practices
Being Around Pets and Plants
Involving Children

Part III: Caring for Yourself

Chapter 11: 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

Chapter 12: 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

Chapter 13: 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

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Customer Reviews

Average Rating 4.5
( 7 )
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Sort by: Showing all of 7 Customer Reviews
  • Anonymous

    Posted January 4, 2004

    Still the best on early Alzheimer's

    When the first edition of this book appeared in late 1999, it became the antidote for the scary books about Alzheimer's disease that have dominated the literature since the 1980s. By focusing on the early stages of the disease, Kuhn provides the right dose of help and hope to those struggling to come to terms with the myriad changes in roles and responsibilities of all concerned. The second edition provides updated information while leaving intact positive messages about living with Alzheimer's and not merely surviving through it. A new chapter gives voice to experienced family members who share valuable lessons. This book provides accurate information about the disease and useful tips that enable family members, friends and interested professionals to cope with someone's memory loss and other thinking problems. It's the one book that should be read by all starting down this difficult road. And doctors should be writing down this title on a prescription pad!

    3 out of 3 people found this review helpful.

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  • Anonymous

    Posted September 26, 2009

    Excellent book

    My 84 year-old mother has moderate level Alzheimer's and I am her sole caregiver. This is by far the best book (of seven) that I've read about how to care for aging parents. I read it through and reread many parts, underlining important things just like I used to do in a college textbook. It was very informative. The book tells about the progression of the disease, what's "normal" for a person with Alzheimer's, what to expect and what steps to take. I highly recommend the book for anyone caring for elderly people, whether the elders have Alzheimer's or another age-related dememtia.

    2 out of 2 people found this review helpful.

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  • Anonymous

    Posted March 2, 2009

    Very Informative & Well Organized

    My mother was diagnosed with early stage Alzheimer's ... I had no idea how to help. This book is an excellent source of information from the diagnostic stage to finding help within the community, making the house safe and easing her/our journey.
    Good referances and practicle information.

    2 out of 2 people found this review helpful.

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  • Anonymous

    Posted March 11, 2008

    Excellent book and a big help

    Very good book for someone with a loved one who has Alzheimer's. This book is packed with lots of useful information. It helped me to better understand what my mom's life is like with this disease and how I can help her. I'm thinking of buying another copy for my family, so I can keep mine to refer back to!

    1 out of 1 people found this review helpful.

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  • Posted January 21, 2014

    This book is a wonderful resource for anyone who is interested i

    This book is a wonderful resource for anyone who is interested in learning more about Alzheimer's Disease. For those of us who have loved ones personally affected, it's even more meaningful. This book is a practical guidebook to help your loved ones or your friends as they navigate the slippery slopes of A.D. The completely updated third edition gives both the afflicted and the caregivers valuable information and hope.

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  • Anonymous

    Posted May 11, 2012

    Best information available

    I found answers to all my questions about Alzheimer's stages. Good advice for caregivers which included financial problems.

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  • Anonymous

    Posted January 8, 2010

    No text was provided for this review.

Sort by: Showing all of 7 Customer Reviews

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