I'm Still Here: A Breakthrough Approach to Understanding Someone Living with Alzheimer's

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9780749952211: I'm Still Here: A Breakthrough Approach to Understanding Someone Living with Alzheimer's
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John Zeisel is president of Hearthstone Alzheimer Care and founder of the Hearthstone Way, an innovative and practical approach to the care of Alzheimer's sufferers. He developed the Artists for Alzheimer's program (ARTZ), which develops cultural experiences for Alzheimer's sufferers. He has a PhD in sociology from Columbia and has taught at Yale, Harvard and McGill.

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Table of Contents


Title Page

Copyright Page











Chapter 9 - A TWO-WAY STREET







Published by the Penguin Group
Penguin Group (USA) Inc., 375 Hudson Street, New York, New York 10014, USA
Penguin Group (Canada), 90 Eglinton Avenue East, Suite 700, Toronto, Ontario
M4P 2Y3, Canada (a division of Pearson Canada Inc.) · Penguin Books Ltd,
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Ireland (a division of Penguin Books Ltd) · Penguin Group (Australia),
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Penguin Books Ltd, Registered Offices: 80 Strand, London WC2R 0RL, England


Copyright © 2009 by John Zeisel

All rights reserved. No part of this book may be reproduced, scanned, or distributed in any
printed or electronic form without permission. Please do not participate in or encourage piracy
of copyrighted materials in violation of the author’s rights. Purchase only authorized editions.
Published simultaneously in Canada


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Library of Congress Cataloging-in-Publication Data
Zeisel, John.
I’m still here : a breakthrough approach to understanding someone living with Alzheimer’s / John Zeisel.
p. cm.
Includes bibliographical references and index.

eISBN : 978-1-101-01563-6

1. Alzheimer’s disease—Patients—Care. I. Title.




Neither the publisher nor the author is engaged in rendering professional advice or services to the individual reader. The ideas, procedures, and suggestions in this book are not intended as a substitute for consulting with a physician. All matters regarding health require medical supervision. Neither the author nor the publisher shall be liable or responsible for any loss or damage allegedly arising from any information or suggestion in this book.


Outdoor recreational activities are by their very nature potentially hazardous. All participants in such activities must assume the responsibility for their own actions and safety. If you have any health problems or medical conditions, consult with your physician before undertaking any outdoor activities. The information in this book cannot replace sound judgment and good decision making, which can help reduce risk exposure, nor does the scope of this book allow for disclosure of all the potential hazards and risks involved in such activities. Learn as much as possible about the outdoor recreational activities in which you participate, prepare for the unexpected, and be cautious. The reward will be a safer and more enjoyable experience.


While the author has made every effort to provide accurate telephone numbers and Internet addresses at the time of publication, neither the publisher nor the author assumes any responsibility for errors, or for changes that occur after publication. Further, the publisher does not have any control over and does not assume any responsibility for author or third-party websites or their content.

For all the residents, families, staff, and colleagues
at Hearthstone Alzheimer Care and the
Hearthstone Alzheimer’s Foundation
who have helped turn an idea
and a dream into a reality,
and from whom I have
learned so much.


IF YOU would like to share your story with me and others, please e-mail it to MyStory@ImStillHere.org. You are invited to share experiences through which you have been touched by compassion; responses to following the mindfulness meditation I describe at the end of the book; and insights you have reached as a partner—what I call the gifts of Alzheimer’s.

My blog is available at www.ImStillHere.org, as are reproductions of paintings and other visual material referred to in this book.



a new philosophy
of care




Why is it that some ideas or behaviors or products start epidemics and others don’t? And what can we do to deliberately start and control positive epidemics of our own?



I FIRST became interested in the challenges of helping people living with Alzheimer’s when about fifteen years ago a nursing home operator approached me for program and design advice. My background is in environmental design, and he came to me because so many of the Alzheimer’s beds in his special-care unit were empty. At that time I didn’t realize this would become my life’s work. It did, because the rather dry question introduced me to a field waiting for redefinition.

My grandfather, whom we called “Apus,” lived with us on the Upper West Side of Manhattan. We called him “senile” and took it for granted that he was a member of the family with certain abilities, and there were some things we didn’t ask of him. I never thought of his condition as an illness. That was the old way.

Today, in North America alone there are 5 million people living with Alzheimer’s, each with an average of five care partners—making 25 million care partners. Worldwide, these figures leap to 50 million people living with Alzheimer’s and 250 million care partners. The care of such people has become a major medical industry, with the number of nursing homes rapidly expanding, and with Alzheimer’s drugs sold in the billions annually. Existing drugs and those in the pipeline that provide hope to future generations at best delay the disease a few months or years; they do not eliminate it. The prognosis for the future: many more people living even longer in the early stages of Alzheimer’s than today.

I have learned over the last fifteen years that treating people with Alzheimer’s the old way was often better, whether they live at home, in assisted-living residences, or in nursing homes. In order to treat people living with Alzheimer’s as people rather than as patients, we first have to appreciate their capabilities as well as their losses. We need to see the person through the fog of the illness, and we have to employ as many nonpharmacological treatments as pharmaceutical ones.

I have stayed in this field because I gradually realized how much the lessons I have learned about people living with Alzheimer’s apply to others with physical, sensory, and cognitive disabilities. The treatment principles involved are equally valid for autism, mental illness, mental retardation, manic depression, diabetes, HIV, and even for a simple cold, or a twisted knee. In fact, the fundamental treatment principles that I describe in this book are universal.

The people living with Alzheimer’s have also inspired me to stay in the field. The way the illness affects the brain leaves most of them exceptionally perceptive, increasingly creative, and highly emotionally intelligent for years.

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Zeisel, John
Published by Piatkus, London. UK (2010)
ISBN 10: 0749952210 ISBN 13: 9780749952211
New Soft cover First Edition Quantity Available: 5
Great Southern Books
(Albany, Australia)

Book Description Piatkus, London. UK, 2010. Soft cover. Condition: New. 1st Edition. 256 pages. This book is BRAND NEW. There may be a remainder mark. Items are shipped same day or next business day and are shipped directly from our Australian address. SYNOPSIS: 'We all think we know what Alzheimer's does to the person who has it, and to those close to them, but we are wrong. John Zeisel's book dispels myth after myth, the most important of which is that the person with Alzheimer's is lost to us. Gently, but with compelling persuasion and logic, he teaches us how to improve beyond recognition the quality of life of a loved one with Alzheimer's. Just as important, he teaches us, the carers, how better to care for ourselves. I lost count of the number of times I gasped with recognition at his description of Alzheimer's behaviour and the corresponding reaction of carers. I would say to anyone living with a loved one who has Alzheimer's, read this book, reread it, keep it for daily reference. It will change more lives than just yours' JOHN SUCHET, presenter and author 'My wife, the writer Iris Murdoch, died of Alzheimer's after a seven year illness, so I am familiar with the situation so masterfully set out in John Zeisel's book. It is certainly the best book yet written about the predicament of Alzheimer's patients and carers and about the compensations of both those states' PROFESSOR JOHN BAILEY CBE 'This book rages with an optimism and determination to champion the cause of sufferer and carer alike. Zeisel's insights into Alzheimer's are as startling as they are fresh, forcing the reader to revisit the comfortable certainties of what they thought they understood to reveal that Alzheimer's has the ability to amplify our understanding of the human condition itself . The humbling lesson from this book is that Alzheimer's provides a metaphor for modern life itself and to ignore it will leave us all the poorer. This should be required reading for anyone with an ambition to create the future. It is both a clarion call and a cautionary tale from a gifted narrator blazing with humanity' TIM SMIT, CBE, Chief Executive and co-founder of The Eden Project Quantity Available: 5. Category: Geriatrics, Mental Health, Aging, Caregiving; ISBN: . ISBN/EAN: 9780749952211. Pictures of this item not already displayed here available upon request. Inventory No: 0001681. Seller Inventory # 0001681

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Published by Piatkus Books
ISBN 10: 0749952210 ISBN 13: 9780749952211
New Softcover Quantity Available: 1
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