I'm Still Here: A New Philosophy of Alzheimer's Care

by John Zeisel

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Author: John Zeisel

Publisher: Avery

Paperback:
ISBN 10: 1583333762
ISBN 13: 978-1583333761

A revolutionary new approach to Alzheimer’s care, focusing on a patient’s strengths to maintain connections with others and the world

There currently is no cure for Alzheimer’s disease— though it can be treated. For the last fifteen years, John Zeisel, Ph.D. has spearheaded a movement to treat Alzheimer’s non-pharmacologically by focusing on the mind’s strengths.

I’m Still Here is a guidebook to Dr. Zeisel’s treatment ideas, showing the possibility and benefits of connecting with an Alzheimer’s patient through their abilities that don’t diminish with time, such as understanding music, art, facial expressions, and touch. By harnessing these capacities, and by using other strategies, it’s possible to offer the person a quality life with connection to others and to the world.

In March 2013, Dr. Zeisel and his work will be the focus of the program airing on public television stations entitled “Hopeful Aging,” bringing his life-changing ideas to a national audience.

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About the Author

John Zeisel is the president of Hearthstone Alzheimer Care, and is the founder of the Hearthstone Way, an innovative and practical approach to the care of people living with dementia. He developed ARTZ, the Artists for Alzheimer’s program, which develops guided museum tours and other cultural experiences for those living with the disease. He holds a Ph.D. in sociology from Columbia, and has taught at Harvard, Yale, and McGill. His work has been covered in The New York Times, The Boston Globe, and O: The Oprah Magazine, and on ABC, CNN, and the BBC. Zeisel divides his time among Montreal, New York City, and Woburn, Massachusetts.

Excerpt. © Reprinted by permission. All rights reserved.

Table of Contents

Title 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

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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.
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.

EMBRACING ALZHEIMER’S

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?

—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.

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I'm Still Here: A New Philosophy of Alzheimer's Care