Alzheimer's For Dummies E-Book

Patricia B. Smith

• Herausgeber: John Wiley & Sons
• Kategorie: Ratgeber
• Sprache: Englisch

Seitenzahl: 656

Veröffentlichungsjahr: 2011

Beschreibung

An estimated 4 million people are living with Alzheimer’s Disease (AD) in America today, with approximately 370,000 new cases diagnosed every year. AD patients live anywhere from 5 to 20 years after their diagnosis; and their inability to care for themselves grows more dramatic as the disease progresses, creating profound implications for their families and healthcare providers. Its impact on families during the caregiving years is overwhelming.

If you have a family member or close friend who’s suffering from Alzheimer’s Disease and you’re looking for current, useful information, then Alzheimer’s For Dummies is for you. This reference guide also is helpful if you

• Need to know more about its diagnosis and treatment
• Want to take care of yourself while taking care of your loved one
• Are not the primary caregiver but want to know how to help
• Want to know how Alzheimer’s Disease is going to affect you and your loved one

Alzheimer’s For Dummies takes a realistic look at Alzheimer’s Disease, what it is and what it isn’t. It offers pertinent, easy-to-understand advice for dealing with the myriad concerns and responsibilities that a primary caregiver must assume when managing an Alzheimer’s patient. Here’s a sampling of the information you’ll find in this valuable guide:

• Maneuvering through medical, legal, and financial tangles
• Distinguishing AD from other brain diseases and medical conditions
• Handling the fears that may accompany the diagnosis
• Evaluating current drug therapies; watching out for scams and quack treatments
• Finding the best doctors; dealing with attorneys and CPAs
• Looking at Medicare regulations
• Evaluating the cost of care
• The current state of research, diagnosis, and treatment

Television personality Leeza Gibbons, whose mother was stricken with AD, writes in the foreword of this book, “There is no upside to keeping your head in the sand. This book is a crucial step in your new fight. Arm yourself with the knowledge waiting for you in these pages. It will help you find answers and resources as you adjust to your new reality.”

Leseprobe

Alzheimer's For Dummies

by Patricia B. Smith, Mary Kenan, PsyD, and Mark Edwin Kunik, MD, MPH

Alzheimer's For Dummies®

Published byWiley Publishing, Inc.111 River St.Hoboken, NJ 07030-5774www.wiley.com

Copyright © 2004 by Wiley Publishing, Inc., Indianapolis, Indiana

Published by Wiley Publishing, Inc., Indianapolis, Indiana

Published simultaneously in Canada

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Unless you’re a medical student or a doctor, you never expect to become a disease expert, but the minute your family gets a diagnosis, you scramble to get your hands on any and all the information you can find. If you’re reading this, you have probably already reached critical mass in your search to become a healthcare advocate for yourself or someone you love. You’re in luck. Alzheimer’s For Dummies will become your constant companion as you battle this illness.

I have always loved the For Dummies books. My own office boasts copies of Philosophy For Dummies, Internet For Dummies, and a couple of other titles that somehow make me feel a little, well, less like a dummy. I never dreamed I would have to add the Alzheimer’s book to my collection.

At the young age of 63, my mother — our rock, our steel magnolia — was diagnosed with early stage Alzheimer’s Disease. Our family felt alone, frustrated and frightened. To make the ache in our hearts even greater, this news closely followed my mother’s painful struggle with her own mother’s battle with the same disease. We lost my Granny. I lose a little more of Mom every day. I want so badly to promise my daughter that she will never have to lose me in the same way.

Until I can promise my children that they don’t have to worry about me, I fight. I learn. I seek information and I look for ways to help. Recently, I created the Leeza Gibbons Memory Foundation and I am proud to announce the opening of Leeza’s Places. Leeza’s Place has been designed to give families, who are struggling with this thief, a safe place for education, energy and empowerment. Our goal is to assist with the day-to-day challenges of coping with this disease and to support both those who have been diagnosed and their caregivers.

Education is one of our primary objectives. There is no upside to keeping your head in the sand. This book is a crucial step in your new fight. Arm yourself with the knowledge waiting for you in these pages. It will help you find answers and resources as you adjust to your new reality.

I promised my mother that I would make her story count and use it to help others. She is in the final stages of the disease now, but she would be so proud to be associated with this series. I’d have given anything to have a book like this when we got our diagnosis. I wish you strength, courage and clarity as you read it and hope that you are able to use what you learn to assist you in your fight.

Blessings,

Leeza Gibbons

About the Author

Patricia Burkhart Smith is an award-winning health and medical writer. She wrote for People magazine for six years. She co-reported a 1998 cover story on breast cancer that won the Society of Professional Journalists’ Peter Lisagor Award for Excellence in Journalism. She also co-reported a 1999 cover story on anorexia that won a second place Time Inc. Luce Award. In addition, Ms. Smith serves as a medical reporter for Houston Northwest Medical Center, which for the past two years has been the only hospital in Houston named to the prestigious annual 100 Top Hospitals in America list. In 1984, Ms. Smith lost her beloved mother to Alzheimer’s and in 1995, her favorite aunt lost her battle with the disease. The two deaths fueled Ms. Smith’s desire to learn as much as she could about Alzheimer’s and share that information with people dealing with the same problems and decisions her own family faced. Ms. Smith lives in The Woodlands, Texas with her two children.

Mary Kenan, PsyD, is a faculty member with the Department of Neurology at Baylor College of Medicine and is a licensed clinical psychologist. She received her B.A. from the University of Oklahoma and her doctorate in clinical psychology from Indiana State University. She completed her clinical internship and a postdoctoral fellowship in geriatric psychology at the Houston Veterans Affairs Medical Center, where she then served as a staff psychologist. In 1999, Dr. Kenan assumed her current position as the Director of Education and patient/family counselor for Baylor College of Medicine’s Alzheimer’s Disease Center. Dr. Kenan’s clinical interests include the non-pharmacological management of Alzheimer’s Disease, issues of adjustment and caregiving in chronic illness, the psychology of health and aging, and personality disorders across the lifespan. Dr. Kenan has served as a member of the Patient and Family Services Committee of the Alzheimer’s Association of Houston and Southeast Texas chapter and she currently holds a appointment to the Texas Council on Alzheimer’s Disease and related Disorders. She is also in private practice.

Mark Edwin Kunik, MD, MPH, is a leading expert on dementia. He is a practicing geropsychiatrist who has conducted extensive clinical and health services research on dementia. Dr. Kunik has done a lot to improve the quality of life for people with dementia, both as a caring physician to his patients and as a researcher who has published more than 40 papers on dementia-related issues alone. The many patients whose lives he’s touched since he first joined the Houston Veterans Affairs Medical Center (VAMC) in 1993 would gladly attest to the thoughtful and sympathetic attention Dr. Kunik he has shown to each one. After having served as the Director of the Geropsychiatry Service at the VAMC from 1993–1999, Dr. Kunik received an Advanced Research Career Development Award and moved to the Houston Center for Quality of Care and Utilization Studies (HCQCUS) portion of the Houston VAMC to further his research efforts on behalf of those with dementia. Recently, he was appointed to the position of Associate Director of the HCQCUS, offering leadership and guidance to numerous other researchers, as well. He is also an Associate Professor in the Department of Psychiatry & Behavioral Sciences at Baylor College of Medicine, where he has served as a faculty member since 1992.

Dedication

To the memory of three of the most important women in my life: my beloved mother, Ruby Nelson Ivey Burkhart, and aunt, Zora Chambers, fondly known as “Aunt Sissy,” and my surrogate grandmother, Jeanette Renegar. All three had Alzheimer’s Disease, and they inspired me to write this book. And to the memory of my beloved father, Hugh Reginald Burkhart, who suffered with Mom as she battled Alzheimer’s Disease.

Finally, to all the researchers, scientists and doctors looking for way to prevent or cure Alzheimer’s Disease, may God guide your efforts so that we may soon celebrate your victory.

— Patricia Burkhart Smith

In memory of my grandparents, C. Joe Chatman, Lela Fay Naylor Chatman, Dan Cummins Kenan, and Mitchell Harrison Kenan.

— Mary Kenan

This book is dedicated to Mardi, Max, and Illan.

— Mark Edwin Kunik

Authors’ Acknowledgments

I would like to acknowledge the contributions of my co-authors, Dr. Mary Mitchell Kenan and Dr. Mark Edwin Kunik. Mary poured her heart and soul into reviewing and strengthening the book, and Mark added many salient points as we went along. If Alzheimer’s Disease could be cured through compassion and dedication alone, then Mary and Mark would surely already have the cure.

I would also like to thank Natasha Graf and Tim Gallan, two of the best editors I’ve ever had the privilege to work with. Writing this book was a time-consuming and complex process that tapped into unplumbed wells of emotion and memories of my mother’s illness. Both Natasha and Tim helped to smooth the way. And Natasha, thanks for all the funny stories. They really helped to keep my spirits up.

— Patricia Burkhart Smith

I would like to thank the Houston Center for Quality of Care and Utilization Studies, Houston Veterans Affairs Medical Center, whose work and resources contributed greatly to this book.

— Mark Edwin Kunik

I am indebted to my Alzheimer’s patients and their families, whose trust in me has enriched my life, and to Rachelle S. Doody, MD, PhD, Director of the Alzheimer’s Disease Center at Baylor College of Medicine, for her continued mentorship and support.

—Mary Kenan

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Contents

Title

Introduction

About This Book

Conventions Used in This Book

Foolish Assumptions

How This Book Is Organized

Icons Used in This Book

Where to Go from Here

Chapter 1: The Facts on Alzheimer’s Disease

Defining Alzheimer’s Disease

Busting the Myths About AD

Looking at Symptoms and Causes

Discovering Treatment Options

Tackling Financial and Legal Issues

Making Medical Decisions and Providing Care

Finding Respite

What Should I Do Now?

Chapter 2: Symptoms, Causes, and Risk Factors

Getting an Idea of What to Look For

Red Flag or Red Herring?

Looking at Some Theories on the Causes of AD

Examining Risk Factors for Developing Alzheimer’s Disease

Chapter 3: Getting a Diagnosis

How Doctors Diagnose Alzheimer’s Disease

Finding Someone to Do an Evaluation

Before You Seek a Diagnosis: Collecting Medical History

Understanding AD Diagnostic Tests

What to Do When the Diagnosis Is Made

Chapter 4: Distinguishing Alzheimer’s Disease from Other Medical Conditions

Making Sure that You Have a Reliable Diagnosis

It May Be Dementia, but Is It Alzheimer’s?

Ruling Out the Usual (and Unusual) Suspects

Chapter 5: Identifying Your Fears: For the Patient and the Caregiver

Concerns for the Alzheimer’s Patient

Concerns for the Caregiver

Part II : Helping a Loved One Manage the Illness

Chapter 6: Understanding the Stages of Alzheimer’s Disease

How to Use the Classifications

Three Stages

Four Stages

Five, Six, and Seven Stages

The Current Thinking: Assessing Alzheimer’s Stages Via Cognitive and Functional Impairment

Chapter 7: Evaluating Drug Therapies

A Little Background on Brain Chemistry

Reviewing Current FDA-Approved Drugs

Considering Other Types of Drugs

Chapter 8: Avoiding Snake Oil and Other Ineffective Treatments

Treatments and Tests That Aren’t Worth Your Time or Money

Sniffing Out Scams: Five Warning Signs to Look For

Chapter 9: Taking Part in Clinical Trials

What Is a Clinical Trial?

Weighing the Benefits and the Risks When Participating in a Clinical Trial

Finding Clinical Trials

Enrolling in a Clinical Trial

What Happens During a Trial

Current Alzheimer’s Trials

Chapter 10: Promising New Drugs and Diagnostic Tools

The Current State of Affairs

Promising (and Not-So-Promising) New Drugs

An Ounce of Prevention: The Hunt for an Alzheimer’s Vaccine

Drugs and Therapies Already Approved for Other Uses

Testing Positive: Looking for the Definitive Diagnosis

Chapter 11: Finding Alternative Therapies

Calming Alzheimer’s Disease Patients

Having Some Fun and Easing Isolation

Part III : Providing Care for the AD Patient

Chapter 12: Making Medical Decisions

Finding the Right Healthcare Provider

Building a Team

Keeping Good Records

Using Alternative Therapies

Evaluating Clinical Trials

Understanding the Importance of Cholinesterase Inhibitors

Deciding on End-of-Life Care Options

Considering Brain Donation

Chapter 13: Understanding Legal Issues for Alzheimer’s Patients

Getting Started

Evaluating Your Legal Options

Durable Power of Attorney

Guardianships or Conservatorships

Living Trusts

Making Choices for Medical Care

Drawing Up a Will

Chapter 14: Working through Financial Issues for Alzheimer’s Patients

Reviewing Financial Needs and Resources

Taking Over the Financial Reins

Understanding Changes in Tax Status

Deciding Whether You Need a Financial Advisor

Quitting Work

Evaluating Insurance Coverage

Running Out of Resources: What Next?

Chapter 15: Evaluating Care Options

Identifying Your Options

Respite Care Options

Making the Transition to Residential Care

Residential Care Options

Chapter 16: Caring for the Alzheimer’s Patient

Making a Care Plan

Defining Practice Parameters and Standards of Care

Standards of Care and Practice Parameters for AD Patients

Caring for AD Patients

Planning Activities and Exercise

Preparing for Bed

Making the House Safer

Dealing with the Patient’s Emotions

Part IV : Respite Care for the Caregiver

Chapter 17: Coping While Caregiving

Caregiving Is Hard Work

Caring for an AD Patient Affects You Emotionally

Caregiving and Your Physical Health

Using Humor to Cope

Knowing When to Ask for Help

Chapter 18: Finding Support

Finding Out What’s Available

Looking into Support Groups

Finding a Counselor

Chapter 19: Taking Care of the Caregiver

Giving Yourself a Break

Being Good to Yourself

Avoiding Isolation

Chapter 20: Handling Work and Family as Caregiver

Understanding the Importance of Routines

Juggling a Job and Caregiving Responsibilities

Balancing Family and Caregiving

Making Time for Your Family

Chapter 21: Helping When You’re Not the Primary Caregiver

Understanding How Family Dynamics Affect Caregiving Decisions

Learning How to Help

Dealing with Out-of-Towner’s Guilt

Part V : The Part of Tens

Chapter 22: Ten Tips for the Alzheimer’s Caregiver

Good: Ask for Help

Bad: “I’d Rather Do It Myself”

Good: Modesty Garments

Bad: Birthday Suit

Good: Ask for Volunteer Assistance

Bad: “I Don’t Need Help from Anyone”

Good: Cook Once, Eat Twice

Bad: Fast Food Bingo

Good: Remember to Laugh Daily

Bad: Wallow in Your Misery

Chapter 23: More Than Ten Internet Resources for Alzheimer’s Caregivers

ADEAR (Alzheimer’s Disease Education and Referral)

Administration on Aging

AgeNet Eldercare Network

Alzheimer’s Association

Alzheimer’s Caregiver Support Online

The Alzheimer’s Foundation of America

benefitscheckup.org

Caregiver.com

CareSsentials

Family Caregiver Alliance

The Leeza Gibbons Memory Foundation

Long-Distance Caregiving

National Family Caregivers Association

Needymeds.com

Medlineplus.gov

Introduction

I t seems like you can’t turn on a TV or pick up a magazine or newspaper these days without seeing something about Alzheimer’s Disease. As Baby Boomers age and advances in healthcare continue to push down the death toll from well-known killers like heart disease and cancer, more people are living longer than ever before, meaning that more people are at risk of developing Alzheimer’s Disease (AD) than ever before.

Put simply, that increase means that more and more families are dealing with Alzheimer’s Disease, trying to provide care for an AD patient while maintaining some semblance of balance in their own lives. If you have a loved one who’s been diagnosed with AD, chances are you’ve got a lot of questions. Alzheimer’s For Dummies tries to help you find the answers that are right for your particular situation.

Statisticians and epidemiologists can paint a big, frightening picture of what the cold numbers and statistics mean for the economy, the healthcare industry, lost productivity, and a dozen other markers. However, little of that information is likely to hold much meaning for the family that must care for a loved one with Alzheimer’s Disease. You want to know how Alzheimer’s Disease is going to affect you and your loved one. How will it change your life, and how can you provide the care and comfort your family needs as they deal with the effects of this disease?

Alzheimer’s For Dummies can help you answer these questions. This book provides a comprehensive look at the current state of research, diagnosis, and treatment of Alzheimer’s Disease. It looks at how AD impacts a family and offers solid, up-to-date advice to guide caregivers through the medical, legal, and financial tangles that can develop when caring for an AD patient. You can find out about the different types of care available and their relative cost, and also get some tips on taking care of the caregiver (whether that person is you or a friend or family member) to keep him or her from burning out or becoming ill.

When reading this book, you’ll discover that you aren’t alone; vast resources are available that are devoted to helping caregivers balance their caregiving responsibilities with caring for the rest of the family and holding down a job. Whether you’re a caregiver, a friend, or a family member of an Alzheimer’s patient simply looking for additional information, this book is a great place to start.

Note: This book provides the most up-to-date information about Alzheimer’s Disease, its diagnosis, and its treatment. The information presented here is intended for educational purposes only and is not meant to replace professional medical evaluation and care.

About This Book

If you think that Alzheimer’s Disease is a hopeless diagnosis, think again. Although no cure is available right now, you can do many things to improve the quality of life both for your loved one with Alzheimer’s and yourself, particularly if you’re the primary caregiver.

Alzheimer’s For Dummies takes a realistic look at Alzheimer’s Disease, what it is and what it isn’t, and offers pertinent, realistic advice for dealing with the myriad of concerns and responsibilities that a primary caregiver must assume when managing an Alzheimer’s patient.

Conventions Used in This Book

This book has a few conventions that we want to point out:

We refer to the person who has Alzheimer’s Disease as “your loved one,” and occasionally as “the AD patient.”

We abbreviate Alzheimer’s Disease as AD, at times, throughout the book.

We want the book to be as user friendly as possible. As far as possible, we’ve used everyday language. If we occasionally have to use a medical term or other important term that may be unfamiliar to you, we italicize it upon first mention and then provide a brief definition.

All Web sites and e-mail addresses appear in monofont to help them stand out in the text.

The sidebars in this book are shaded gray and contain relevant but nonessential info. If you want to read them, that’s great, but you won’t be missing any important points if you skip them.

Foolish Assumptions

We assume that you, the reader, have a family member or close friend who’s suffering from Alzheimer’s Disease and that you bought this book because you’re looking for current, helpful information about the disease, its diagnosis, and treatment. We also assume that you want to take care of yourself while taking care of your loved one, so we’ve included info on getting that topic as well.

Finally, we assume that you understand that although AD is associated with the aging process, it’s by no means a normal or inevitable part of aging.

How This Book Is Organized

Alzheimer’s For Dummies is divided into five parts. Each part covers a different aspect of dealing with Alzheimer’s Disease. It’s not necessary to read the book through from cover to cover; however, you may want to read the first part to get a thorough understanding of the basics of Alzheimer’s Disease. After that you can use the Table of Contents to look up specific topics of interest and read those sections. Each section flows into the next, but is also written to stand on its own.

Because the book is arranged in a modular fashion that allows you to jump in wherever you want, we provide lots of cross-references within the text to help you find additional topics of interest.

Part I: Could It Be Alzheimer’s Disease?

Part I identifies the symptoms and risk factors for Alzheimer’s Disease, and walks you through the diagnostic process. You find out what distinguishes AD from other brain diseases and medical conditions and how to handle the fears that may accompany the diagnosis.

Part II: Helping a Loved One Manage the Illness

With diagnosis in hand, the next step is understanding the various stages of Alzheimer’s Disease and how they impact caregiving. This part helps you evaluate current drug therapies and watch out for scams and quack treatments, and it explains the benefits and pitfalls of participating in a clinical trial. It also covers effective alternative therapies and takes a peek into the future to see what researchers are working on in the hope of finding new treatments, or maybe even a cure.

Part III: Providing Care for the AD Patient

Part III is a crash course in a book, with valuable information regarding the myriad medical, legal, and financial issues you have to deal with as an Alzheimer caregiver. You discover how to find the best doctors and how to deal with attorneys and CPAs. You also find everything you ever wanted to know about Medicare regulations, evaluating the cost of care, plus you get some smart ideas about what to do if your family doesn’t have adequate resources to provide care. The different types of care are evaluated to help you select the care option that best suits your family. And you can find a complete range of information about the requirements of the caregiver’s job and how to find reliable people who can sub for you when you need a break.

Part IV: Respite Care for the Caregiver

Providing care for a person with Alzheimer’s Disease can be a daunting task. The demands are many and unrelenting, and the job grows more difficult as your loved one progresses through the stages of AD. Part IV offers some smart ideas to help the caregiver manage stress and cope with the demands of caregiving. You find ideas to take better care of yourself, maintain your own physical and mental health, and enlist help from family, friends, professional caregivers, and support groups. We even show you how to juggle work, family, and caregiving in a productive way. Finally, other family members can find out how to help the primary caregiver, even if he or she lives hundreds of miles away.

Part V: The Part of Tens

The Part of Tens is a For Dummies tradition, featuring quick resources that provide lots of information in an easy-to-digest fashion. Alzheimer’s For Dummies contains two Part of Tens chapters. We tell you ten ways that caregivers can get a break, and list more than ten invaluable resources for Alzheimer’s Disease caregivers.

Icons Used in This Book

Wherever you see a term, medical or otherwise, that isn’t exactly part of everyday vernacular, you’ll also see this icon, followed by an explanation in plain language.

Text next to this icon is difficult or complicated medical information. Feel free to skip it.

This icon points out little snippets of information that guide you to interesting Web sites or tell you easier ways to get things done.

Whatever you do, don’t skip paragraphs that have this icon attached. Warnings alert you to scams, dangerous situations, and other pitfalls to avoid. Reading this info can help you protect your loved one and yourself.

We use this icon to flag information that you ought to keep in mind.

Where to Go from Here

If you don’t know a thing about Alzheimer’s Disease (or you just can’t bring yourself to begin a book in the middle), start from the beginning with Chapter 1. If a loved one has received a diagnosis of AD and you want to know what treatments and care are available, check out Parts II and III. If you need advice on caring for someone with AD, see Part IV.

Part I

Could It Be Alzheimer’s Disease?

In this part . . .

We identify the symptoms and risk factors for Alzheimer’s Disease, and we walk you through the diagnostic process. You discover what distinguishes AD from other brain diseases and medical conditions, and we talk about how to handle the fears that may accompany the diagnosis.

Chapter 1

The Facts on Alzheimer’s Disease

In This Chapter

Defining Alzheimer’s Disease

Finding out about Alzheimer’s Disease

T he last time you visited your elderly mother, she seemed confused and disoriented. She kept asking the same question over and over again and couldn’t remember that you’d already given her the answer a dozen times. She laughed uproariously over something you said that wasn’t meant to be funny and spent a good deal of your visit staring into space with a blank expression in her eyes. When you got ready to leave, she became quite upset because she couldn’t find her purse and accused you of hiding it. None of these behaviors is typical for her, and you can’t help wondering — could this be Alzheimer’s Disease?

It could be.

An estimated 4 million people are living with Alzheimer’s Disease (AD) in America today, with approximately 370,000 new cases diagnosed every year. The incidence of the disease rises dramatically with age, from 3 percent affected in the 65 to 74 year age range all the way up to 47 percent affected in the 85 and older age range. AD patients live anywhere from 5 to 20 years after their diagnosis, and their inability to care for themselves grows more dramatic as the disease progresses, creating profound implications for their families and healthcare providers.