AES2-R8_cover_Q7Mac:AES2 cover REPRINT 12/21/09 3:47 PM Page 1 HEALTH/AGING COMPLETELY UPDATED SECOND EDITION “...anAlzheimer’sclassictobesure.Amust-haveforthewell-readpersons K interestedinAlzheimer’sdisease.” —AmericanJournalofAlzheimer’sDisease U H The only book to offer knowledge N Alzheimer ’s and support for the early stages of Alzheimer’s disease A Early Where can you turn if someone you love has just DANIELKUHN, l been diagnosed with or shows signs of having MSW,isthe z Alzheimer’s? According to author Daniel Kuhn, directorofthe h theearlystagesofAlzheimer’sareadifficulttimeforrelatives Professional and friends because they may not know much about the TrainingInstitute,Alzheimer’s e Stages diseaseorhowtheycanhelp.Hishighlypracticalbookfills Association—GreaterIllinois i theinformationgap. Chapter.Hehasauthored m the latest Part I: What IsAlzheimer’s Disease? focuses onthe med- andcoauthoredovertwo information on ical aspects of the disease. It includes a comparison of dozenjournalarticleson e the normal effects of aging and the effectsofAlzheimer’s, a thepsychosocialaspects (cid:1) howAlzheimer’s discussionofhowtogetadiagnosis,achapteronriskfactors ofAlzheimer’sdiseaseand r begins andthelatestinformationontreatmentanddrugs. servesontheeditorial ’s FIRST STEPS boardsofAlzheimer’sCare Part II: Giving Care centers around how to plan immedi- (cid:1) how to recognize Quarterly,TheAmerican ately for long-term needs, from legal and financial issues E JournalofAlzheimer’s FOR FAMILY, early symptoms to living arrangements. It explores the changes in relation- shipsthattakeplaceandincludesadviceonimprovingcom- DiseaseandEarly a munication. An important chapter shows the Alzheimer’s Alzheimer’s. (cid:1) what you should do FRIENDS AND experiencefromtheperspectiveofpeoplewiththedisease. DAVIDA.BENNETT,M.D., r immediately l Part III: Caring for Yourself offers advice to relatives and isDirectoroftheRush y friends on how to stay healthy and positive when caring for Alzheimer’sDiseaseCenter CAREGIVERS (cid:1) what you should a loved one with Alzheimer’s. Suggestions include joining atRushPresbyterian- plan for S support groups, exploring spiritual resources and obtaining St.Luke’sMedicalCenter assistance with care. Extensive resource listings put addi- inChicago. t (cid:1) how to take care of tionalhelpateveryreader’sfingertips. a yourself This new edition contains updated information on risk factors, treatment options, drug N approvals and federal coverage of counseling and other health-related services through ESIG g D Medicare.Avaluablechapterentitled“VoicesofExperience,”composedofreflectionsby HIC e P family members, offers readers ideas about what works and what doesn’t in dealing with A GR s lovedoneswiththedisease. R A M TT DANIEL KUHN, MSW 978-0-89793-397-1 U.S.$16.95 DI N A Distributedtothetradeby RI B PublishersGroupWest Y NB Foreword byDavid A. Bennett, M.D., Booksforhealth, OborodkesrHonulninteeraHtouse DESIG Director,RushAlzheimer’sDiseaseCenter familyandcommunity www.hunterhouse.com ER V O C AES2 text.qxd 2/17/2003 3:44 PM Page i Alzheimer’s Early Stages • (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) SSeelleecctteedd RReevviieewwss “…an Alzheimer’s classic to be sure. A must-have for the well-read per- sons interested in Alzheimer’s disease.” — American Journal of Alzheimer’s Disease “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.” — Library Journal “Alzheimer’s Early Stagesis practical, authoritative, and written with a clar- ity that will be appreciated by the general reader.” — Reviewer’s Bookwatch “Daniel Kuhn…writes with calm authority about a disease that is leg- endary for creating fear, confusion, and loneliness. His approach is realis- tic but reassuring.” — The Birmingham News “…(the author’s) hands-on experience with and empathy for persons with dementia and their caregivers jump off the page in this impressive new book.” — Early Alzheimers: A Forum for Early Stage Dementia Care “…does 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 com- mended for this very worthwhile contribution.” — Perspectives: A Newsletter for Individuals Diagnosed with Alzheimer’s Disease “Daniel Kuhn’s book is a welcome addition to the caregiver literature.” — Family Caregiver Alliancenewsletter AES2 text.qxd 2/17/2003 3:44 PM Page ii “…highly recommended as a state-of-the-art review on managing the dis- ease and the people who care for them. No social worker’s library should be without Kuhn’s book.” — Journal of Social Work in Long Term Care “Dan Kuhn has been listening to persons with AD and their families throughout his many years of practice and has put this understanding to good use in this book. Social workers will be pleased to have this excellent resource to recommend to their clients.” — Social Work AGEnda,Newsletter of the Association for Gerontology in Socal Work WWhhaatt ootthheerrss aarree ssaayyiinngg aabboouutt tthhiiss bbooookk...... “I would highly recommend this book to our families that are dealing with a new diagnosis in an early stage patient, and also to professional care- givers working with patients in the early stages.” — Daniel L. Paris, Massachusetts General Hospital, Memory Disorders Clinic “Dan Kuhn helps fill a void in the literature by offering families a wealth of insightful and practical information about early-stage Alzheimer’s dis- ease, something that too many families and patients have suffered through alone.” — Mark A. Sager, M.D., Professor of Medicine, University of Wisconsin Medical School and Director, Wisconsin Alzheimer’s Institute “Alzheimer’s Early Stages presents thoughtful, practical guidance for care- givers based on up-to-date scientific studies. The information provided is of the highest quality, and the guidance offered is thoroughly wise.” — Stephen G. Post, Ph.D., Professor of Bioethics, School of Medicine, Case Western Reserve University and author of The Moral Challenge of Alzheimer’s Disease “This well-written, thoughtful and informative book should be on the shelf of every health-care provider and should also be recommended to those who are beginning their journey of caring for a person with Alzheimer’s disease. Dan Kuhn is a knowledgeable, kind, and practical man, and read- ers will reap the benefits of his wisdom and sensitivity.” — Mary S. Mittelman, DrPH, and Cynthia Epstein, MSW, New York University School of Medicine’s Alzheimer’s Disease Center and coau- thors of Counseling the Alzheimer’s Caregiver: A Resource for Health Care Professionals AES2 text.qxd 2/17/2003 3:44 PM Page iii “Alzheimer’s Early Stages is a must-have book for anyone diagnosed with the disease and his or her family members. Thoughtful, informative, and wide-ranging, it answers the questions any of us have when facing this challenging disease.” — David Troxel, MPH, coauthor of The Best Friends Approach to Alzheimer’s Diseaseand CEO, California Central Coast Alzheimer’s Association “With the plethora of publications on Alzheimer’s disease, few capture the biopsychosocial aspects of the illness with the clarity and understanding of Dan Kuhn. This book combines clinical experience and acumen with knowledge of the research and science. With a crisp writing style and logical presentations, this book is recommended for all clinicians working with those with Alzheimer’s disease and their families.” — Sanford Finkel, M.D., Professor of Clinical Psychiatry, University of Chicago Medical School and Director, Leonard Schanfield Research Insti- tute, Council for Jewish Elderly “This book will be of interest to those who care for people with Alz- heimer’s disease: families, friends, and others who provide direct care. It’s chock full of information and advice for caregivers and professionals in the field of eldercare. It provides compassionate support for anyone involved in the care of a person with dementia.” — Mary Tellis-Nayak, RN, MSN, MPH, President, American College of Health Care Administrators “This book dispels the devastating image many people continue to hold of a person with Alzheimer’s disease and promotes our understanding of the experience of the illness in the early stages. Both families and health-care professionals will benefit greatly from not only reading it, but using it as a resource and guide. It is both practical and wise.” — Darby Morhardt, MSW, Director of Education, Northwestern University School of Medicine’s Cognitive Neurology & Alzheimer’s Disease Center “Dan Kuhn offers thoughtful readers whose lives are touched by Alz- heimer’s disease an excellent resource for information about the disease process itself, with a particularly fine section on the lived experience, ways to plan for and enhance daily life as well as essential information about caring for the self.” — Carol Bowlby Sifton, BA BScOT ODH, Editor,Alzheimer’s Care Quarterly AES2-R7 text.qxd 4/10/2008 3:43 PM Page iv DEDICATION IN MEMORY OF ALBERT KUHN, GLADYS CURTIS, AND TO ALL OTHERS WHO LIVE IN THE SHADOW OF ALZHEIMER’S DISEASE AND RELATED DEMENTIAS. (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) IMPORTANT NOTE The material in this book is intended to provide a review of resources and information related to Alzheimer’s disease. Every effort has been made to provide accurate and dependable information. The contents of the book have been compiled through professional research and in consultation with medical professionals. However, scientists and health-care professionals often have differing opinions, and it is important to appreciate the fact that advances in medical and scientific research are made very quickly, so some of the information in this book may become outdated. Therefore, the publisher, authors, and editors, and the professionals quoted in the book cannot be held responsible for any error, omission, or dated material. The authors, editors, and publisher assume no responsibility for any outcome of applying the information in this book in a program of self- care or under the care of a licensed practitioner. (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) Ordering Trade bookstores in the U.S. and Canada please contact: Publishers Group West 1700 Fourth Street, Berkeley CA 94710 Phone: (800) 788-3123 Fax: (800) 351-5073 Hunter House books are available at bulk discounts for textbook course adoptions; to qualifying community, health-care, and government organizations; and for special promotions and fund-raising. For details please contact: Special Sales Department Hunter House Inc., PO Box 2914, Alameda CA 94501-0914 Phone: (510) 865-5282 Fax: (510) 865-4295 E-mail: [email protected] Individuals can order our books from most bookstores, by calling (800) 266-5592, or from our website at www.hunterhouse.com AES2 text.qxd 2/17/2003 3:44 PM Page v Alzheimer’s Early FIRST STEPS FOR Stages FAMILIES, FRIENDS AND Second Edition CARE- GIVERS (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) Daniel Kuhn, MSW Copyright © 1999, 2003 by Daniel Kuhn All rights reserved.No part of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying and recording, or introduced into any information storage and retrieval system without the written permission of the copyright owner and the publisher of this book. Brief quotations may be used in reviews prepared for inclusion in a magazine, newspaper, or for broadcast. For further information please contact: Hunter House Inc., Publishers PO Box 2914 Alameda CA 94501-0914 Grateful acknowledgment is made for permission to reprint excerpts from the fol- lowing works: My Journey into Alzheimer’s Diseaseby Robert Davis, Wheaton, IL: Tyndale House Publishers, 1989; Living in the Labyrinthby Diana Friel McGowin, Forest Knolls, CA: Elder Books, 1994; Show Me the Way to Go Homeby Larry Rose, Forest Knolls, CA: Elder Books, 1995; Who Will I Be When I Die?by Christine Boden, East Melbourne, Australia: HarperCollins Publishers, 1998; Partial View: An Alzheimer’s Journalby Cary Smith Henderson, Ruth D. Henderson, and Jackie H. Main, Dallas, TX: Southern Methodist University Press, 1998. All rights reserved. Library of Congress Cataloging-in-Publication Data Kuhn, Daniel. Alzheimer’s early stages : first steps for families, friends and caregivers / Daniel Kuhn. p. cm. Includes bibliographical references and index. ISBN: 978-0-89793-397-1 (pbk. : alk. paper) 1. Alzheimer’s disease—Popular works. 2. Caregivers. I. Title. RC523.2 .K838 2003 616.8'31—dc21 2002151932 Project Credits Cover Design: JilWeil Publicity Coordinator: Earlita Chenault Book Production: Hunter House Sales & Marketing Coordinator: Copy Editor: Rachel E. Bernstein Jo Anne Retzlaff Proofreader: John David Marion Customer Service Manager: Indexer: Nancy D. Peterson Christina Sverdrup Acquisitions Editor: Jeanne Brondino Order Fulfillment: Lakdhon Lama Editor: Alexandra Mummery Administrator: Theresa Nelson Editorial Assistant: Caroline Knapp Computer Support: Peter Eichelberger Publisher: Kiran S. Rana Printed and Bound by Sheridan Books, Ann Arbor, Michigan Manufactured in the United States of America 12 11 10 9 8 Second Edition 10 11 12 13 14 AES2 text.qxd 2/17/2003 3:44 PM Page vii Contents (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) (cid:127) Foreword . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xi Acknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xiv Introduction to the Second Edition . . . . . . . . . . . . . . . . . . 1 Introduction to the First Edition: Why I Wrote this Book . . 3 How this Book Is Organized . . . . . . . . . . . . . . . . . . . . . . . 6 Part I: What Is Alzheimer’s Disease? . . . . . 9 1 The Need for an Accurate Diagnosis . . . . . . . . . . . . . . 10 What Is Normal in the Aging Brain? . . . . . . . . . . . . . . . . . 11 How Alzheimer’s Disease Changes the Brain . . . . . . . . . . 13 Getting an Accurate Diagnosis . . . . . . . . . . . . . . . . . . . . . 17 The Value of a Diagnosis . . . . . . . . . . . . . . . . . . . . . . . . . 21 Disclosing the Diagnosis . . . . . . . . . . . . . . . . . . . . . . . . . 23 2 Symptoms of the Early Stages of Alzheimer’s Disease . 27 What Is Recent Memory? . . . . . . . . . . . . . . . . . . . . . . . . 28 Beginning Signs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28 An Emerging Pattern . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32 Other Troubling Symptoms . . . . . . . . . . . . . . . . . . . . . . . 36 One or More Symptoms Sometimes Present . . . . . . . . . . 37 Noncognitive or Behavioral Changes . . . . . . . . . . . . . . . . 41 3 Risk Factors for Developing Alzheimer’s Disease . . . . . 46 Identifying Risk Factors . . . . . . . . . . . . . . . . . . . . . . . . . . 46 Definite Risk Factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48 Possible Risk Factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53 Exploring the Role of Depression . . . . . . . . . . . . . . . . . . . 59 vii AES2 text.qxd 2/17/2003 3:44 PM Page viii viii ALZHEIMER’S EARLY STAGES 4 Progress in Treatment and Prevention of Alzheimer’s Disease . . . . . . . . . . . . . . . . . . . . . . . . . . . 63 Current Treatments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65 Progress in Treatment and Prevention . . . . . . . . . . . . . . . 68 Participating in Clinical Drug Trials and Other Studies . . . 75 The Limits of Medicine . . . . . . . . . . . . . . . . . . . . . . . . . . 78 Part II: Giving Care . . . . . . . . . . . . . . . . . . 81 5 What Is It Like to Have Alzheimer’s Disease? . . . . . . . 82 Some Common Experiences and Feelings . . . . . . . . . . . . 83 Varying Degrees of Awareness of Symptoms . . . . . . . . . 88 The Importance of Social Environment . . . . . . . . . . . . . . . 94 What Do People with AD Really Need? . . . . . . . . . . . . . . 95 What Some Family Members Have to Say . . . . . . . . . . . . 98 6 How Relationships, Roles, and Responsibilities Change . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101 Accepting the Diagnosis . . . . . . . . . . . . . . . . . . . . . . . . . 102 Stepping into the Leadership Role . . . . . . . . . . . . . . . . . . 104 When Your Partner Has AD . . . . . . . . . . . . . . . . . . . . . . . 107 When Your Parent Has AD . . . . . . . . . . . . . . . . . . . . . . . . 110 Telling Others About the Diagnosis . . . . . . . . . . . . . . . . . 114 The Reactions of Others . . . . . . . . . . . . . . . . . . . . . . . . . 118 7 Making Practical Decisions . . . . . . . . . . . . . . . . . . . . . 121 Ensuring Safety on the Road . . . . . . . . . . . . . . . . . . . . . . 122 Maintaining Good Health . . . . . . . . . . . . . . . . . . . . . . . . . 127 Ensuring Financial Well-Being . . . . . . . . . . . . . . . . . . . . . 130 Alternative Living Situations for the Person with AD . . . . . 133 Doing the Right Thing . . . . . . . . . . . . . . . . . . . . . . . . . . . 135 8 Improving Communication . . . . . . . . . . . . . . . . . . . . . 138 Communication Difficulties . . . . . . . . . . . . . . . . . . . . . . . 139 Redefining Your Relationship . . . . . . . . . . . . . . . . . . . . . . 146 Ways of Listening to and Talking with a Person with AD . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 148 Whose Problem Is It? . . . . . . . . . . . . . . . . . . . . . . . . . . . . 156 AES2 text.qxd 2/17/2003 3:44 PM Page ix Contents ix 9 Helping a Person with AD to Plan for the Future . . . . 158 Finding the Time . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 159 Legal Considerations . . . . . . . . . . . . . . . . . . . . . . . . . . . . 160 Financing the Cost of Care . . . . . . . . . . . . . . . . . . . . . . . . 166 Rethinking the Living Situation . . . . . . . . . . . . . . . . . . . . . 171 Finding the Right Professionals . . . . . . . . . . . . . . . . . . . . 176 10 Keeping a Person with AD Active and Healthy . . . . . . 180 Involving Others . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 181 Selecting Appropriate Activities . . . . . . . . . . . . . . . . . . . . 183 The Importance of Everyday Activities . . . . . . . . . . . . . . . 186 Intellectual Activities . . . . . . . . . . . . . . . . . . . . . . . . . . . . 187 Traveling . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 189 Participating in Social Events . . . . . . . . . . . . . . . . . . . . . . 190 Reminiscing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 190 Spiritual and Religious Practices . . . . . . . . . . . . . . . . . . . 191 Helping the Person with AD Maintain Physical Health . . . 192 Support Groups, Volunteer Work, and Other Activity Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 194 Being Around Pets and Plants . . . . . . . . . . . . . . . . . . . . . 197 Getting Children Involved . . . . . . . . . . . . . . . . . . . . . . . . . 199 PartIII: Caring for Yourself . . . . . . . . . . . . 201 11 Self-Renewal for Family and Friends . . . . . . . . . . . . . . 202 Listening to Your Body and Mind . . . . . . . . . . . . . . . . . . . 204 The Importance of Grief . . . . . . . . . . . . . . . . . . . . . . . . . . 207 Individual and Family Counseling . . . . . . . . . . . . . . . . . . . 209 Exploring Spiritual Resources . . . . . . . . . . . . . . . . . . . . . . 211 Keeping a Journal . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 214 Maintaining a Sense of Humor . . . . . . . . . . . . . . . . . . . . . 215 12 Obtaining the Help You May Need . . . . . . . . . . . . . . . 217 Using Community Resources . . . . . . . . . . . . . . . . . . . . . . 218 Participating in a Support Group . . . . . . . . . . . . . . . . . . . 219 Using Help at Home . . . . . . . . . . . . . . . . . . . . . . . . . . . . 221 Choosing an Adult Day Center . . . . . . . . . . . . . . . . . . . . . 225 The National Family Caregiver Support Program . . . . . . . . 228 Learning More About AD . . . . . . . . . . . . . . . . . . . . . . . . . 229