Caregiving in Alzheimer’s and Other Dementias YALE UNIVERSITY PRESS HEALTH & WELLNESS A Yale University Press Health & Wellness book is an authoritative, accessible source of information on a health-related topic. It may provide guidance to help you lead a healthy life, examine your treatment options for a specific condition or disease, situate a healthcare issue in the context of your life as a whole, or address questions or concerns that linger after visits to your healthcare provider. For a complete list of titles in this series, please consult yalebooks.com. Joseph A. Abboud, M.D., and Soo Kim Abboud, M.D., No More Joint Pain Thomas E. Brown, Ph.D., Attention Deficit Disorder: The Unfocused Mind in Children and Adults Patrick Conlon, The Essential Hospital Handbook: How to Be an Effective Partner in a Loved One’s Care Richard C. Frank, M.D., Fighting Cancer with Knowledge and Hope: A Guide for Patients, Families, and Health Care Providers Michelle A. Gourdine, M.D., Reclaiming Our Health: A Guide to African American Wellness Marjorie Greenfield, M.D., The Working Woman’s Pregnancy Book Ruth H. Grobstein, M.D., Ph.D., The Breast Cancer Book: What You Need to Know to Make Informed Decisions James W. Hicks, M.D., Fifty Signs of Mental Illness: A Guide to Understanding Mental Health Steven L. Maskin, M.D., Reversing Dry Eye Syndrome: Practical Ways to Improve Your Comfort, Vision, and Appearance Mary Jane Minkin, M.D., and Carol V. Wright, Ph.D., A Woman’s Guide to Menopause and Perimenopause Arthur W. Perry, M.D., F.A.C.S., Straight Talk about Cosmetic Surgery Eric Pfeiffer, M.D., Caregiving in Alzheimer’s and Other Dementias Eric Pfeiffer, M.D., Winning Strategies for Successful Aging Madhuri Reddy, M.D., M.Sc., and Rebecca Cottrill, R.N., M.Sc.C.H. Healing Wounds, Healthy Skin: A Practical Guide for Patients with Chronic Wounds E. Fuller Torrey, M.D., Surviving Prostate Cancer: What You Need to Know to Make Informed Decisions Caregiving in Alzheimer’s and Other Dementias Eric Pfeiffer, M.D. FOREWORD BY Gayle Sierens New Haven & London The information and suggestions contained in this book are not intended to replace the services of your physician or caregiver. Because each person and each medical situation is unique, you should consult your own physician to get answers to your personal questions, to evaluate any symptoms you may have, or to receive suggestions for appropriate medications. The author has attempted to make this book as accurate and up to date as possible, but it may nevertheless contain errors, omissions, or material that is out of date at the time you read it. Neither the author nor the publisher has any legal responsibility or liability for errors, omissions, out-of-date material, or the reader’s application of the medical information or advice contained in this book. Copyright © 2015 by Eric Pfeiffer, M.D. All rights reserved. This book may not be reproduced, in whole or in part, including illustrations, in any form (beyond that copying permitted by Sections 107 and 108 of the U.S. Copyright Law and except by reviewers for the public press), without written permission from the publishers. Yale University Press books may be purchased in quantity for educational, business, or promotional use. For information, please e-mail [email protected] (U.S. office) or [email protected] (U.K. office). Designed by James J. Johnson. Set in Swift type by Integrated Publishing Solutions. Printed in the United States of America. Library of Congress Cataloging-in-Publication Data Pfeiffer, Eric, 1935– Caregiving in alzheimer’s and other dementias / Eric Pfeiffer, M.D. ; foreword by Gayle Sierens, News Anchor, NBC-TV, Tampa, Florida. pages cm Includes index. ISBN 978-0-300-20798-9 (pbk. : alk. paper) 1. Alzheimer’s disease--Patients-- Care. 2. Caregivers. I. Title. RC523.P436 2015 616.8'31--dc23 2014033323 A catalogue record for this book is available from the British Library. This paper meets the requirements of ANSI/NISO Z39.48–1992 (Permanence of Paper). 10 9 8 7 6 5 4 3 2 1 Contents Foreword by Gayle Sierens ix Introduction 1 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 CONTENTS Part II. Learning about Your Loved One’s Condition 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 vi CONTENTS 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 Postscript 238 Appendix: Resources for Caregivers and Families 247 Acknowledgments 255 Index 259 About the Author 267 vii This page intentionally left blank Foreword Nearly thirty years ago I had the distinct pleasure of meeting Dr. Eric Pfeiffer. As a television news reporter and anchor, it was my job to share with our viewers the latest breakthroughs in medicine. Here in Florida, a great deal of that news deals with our aging popula- tion, of which I am now a part. I had the good fortune to meet and interview this brilliant man whose passion it is to better the lives of the elderly, and help the rest of us understand what they are facing and in many cases, already dealing with. Little did I know that I would be one of those people. I am the only child of a mother who has now moved through all the stages of Alzheimer’s. It’s hard to under- stand that world unless you are in the middle of it. But Dr. Pfeiffer has given us not only a glimpse into that ix
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