Table of Contents
Title Page
Copyright Page
Dedication
Chapter 1 - EMBRACING ALZHEIMER’S
Chapter 2 - THE ALZHEIMER’S JOURNEY
Chapter 3 - THE ALZHEIMER’S BRAIN
Chapter 4 - ART AND ALZHEIMER’S
Chapter 5 - THE DRAMATIC ARTS
Chapter 6 - TREATMENT BY DESIGN
Chapter 7 - BUILDING A NEW RELATIONSHIP
Chapter 8 - APPRECIATING THE NEW RELATIONSHIP
Chapter 9 - A TWO-WAY STREET
Chapter 10 - THE GIFTS OF ALZHEIMER’S
Chapter 11 - BEING IN THE PRESENT MOMENT
Acknowledgements
REFERENCES
INDEX
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,
80 Strand, London WC2R 0RL, England • Penguin Ireland, 25 St Stephen’s Green, Dublin 2,
Ireland (a division of Penguin Books Ltd) • Penguin Group (Australia),
250 Camberwell Road, Camberwell, Victoria 3124, Australia
(a division of Pearson Australia Group Pty Ltd) • Penguin Books India Pvt Ltd,
11 Community Centre, Panchsheel Park, New Delhi-110 017, India
Penguin Group (NZ), 67 Apollo Drive, Rosedale, North Shore 0632, New Zealand
(a division of Pearson New Zealand Ltd) • Penguin Books (South Africa) (Pty) Ltd,
24 Sturdee Avenue, Rosebank, Johannesburg 2196, South Africa
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
Most Avery books are available at special quantity discounts for bulk purchase for sales promotions, premiums, fundraising,
and educational needs. Special books or book excerpts also can be created to fit specific needs. For
details, write Penguin Group (USA) Inc. Special Markets, 375 Hudson Street, New York, NY 10014.
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.
RC523.Z
616.8’31—dc22
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.
AUTHOR’S NOTE
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.
1
EMBRACING ALZHEIMER’S
a new philosophy
of care
—MALCOLM GLADWELL
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.
Table of Contents
Title Page
Copyright Page
Dedication
Chapter 1 - EMBRACING ALZHEIMER’S
Chapter 2 - THE ALZHEIMER’S JOURNEY
Chapter 3 - THE ALZHEIMER’S BRAIN
Chapter 4 - ART AND ALZHEIMER’S
Chapter 5 - THE DRAMATIC ARTS
Chapter 6 - TREATMENT BY DESIGN
Chapter 7 - BUILDING A NEW RELATIONSHIP
Chapter 8 - APPRECIATING THE NEW RELATIONSHIP
Chapter 9 - A TWO-WAY STREET
Chapter 10 - THE GIFTS OF ALZHEIMER’S
Chapter 11 - BEING IN THE PRESENT MOMENT
Acknowledgements
REFERENCES
INDEX
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,
80 Strand, London WC2R 0RL, England • Penguin Ireland, 25 St Stephen’s Green, Dublin 2,
Ireland (a division of Penguin Books Ltd) • Penguin Group (Australia),
250 Camberwell Road, Camberwell, Victoria 3124, Australia
(a division of Pearson Australia Group Pty Ltd) • Penguin Books India Pvt Ltd,
11 Community Centre, Panchsheel Park, New Delhi-110 017, India
Penguin Group (NZ), 67 Apollo Drive, Rosedale, North Shore 0632, New Zealand
(a division of Pearson New Zealand Ltd) • Penguin Books (South Africa) (Pty) Ltd,
24 Sturdee Avenue, Rosebank, Johannesburg 2196, South Africa
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
Most Avery books are available at special quantity discounts for bulk purchase for sales promotions, premiums, fundraising,
and educational needs. Special books or book excerpts also can be created to fit specific needs. For
details, write Penguin Group (USA) Inc. Special Markets, 375 Hudson Street, New York, NY 10014.
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.
RC523.Z
616.8’31—dc22
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.
AUTHOR’S NOTE
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.
1
EMBRACING ALZHEIMER’S
a new philosophy
of care
—MALCOLM GLADWELL
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.
