Stephen G. Post - Dignity for Deeply Forgetful People: How Caregivers Can Meet the Challenges of Alzheimers Disease

As a son who experienced up close the painful yet precious course of Alzheimers over two decades, I wish I had had the benefit of Dr. Posts book at hand. In this most enlightening study of the mystery of human dignity and identity under siege, he lifts the veil on that dreaded disease and provides insights, explanations, and hope for retaining the connections that count. Those unexpected, seemingly miraculous glimmers of the beloved as through a glass darkly are here illumined both scientifically and spiritually as we confront our ultimate humanityand human potentialface to face. Charles Scribner III, author of Home by Another Route: A Journal of Art, Music, and Faith

Post brings to this book his tremendous compassion and understanding for the persons he calls deeply forgetful, placing them on the same spectrum with all of us. The great humanity of his approach makes for a deeply rich, resilient, and nurturing community for us all. A must-read! Gayatri Devi, MD, Director, New York Memory and Healthy Aging Services, author of The Spectrum of Hope: An Optimistic and New Approach to Alzheimers Disease and Other Dementias

I am pleased to see Dr. Stephen G. Post addressing themes such as consciousness and interconnectedness in his new book, which will contribute to the flourishing of humanity. The Dalai Lama

The best summary of medical ethical issues in Alzheimers disease from diagnosis to the end stage yet produced. Post is recognized worldwide as the foremost medical humanist and ethicist writing on this vitally important topic. This wonderfully written book awakens us to the continuing selfhood of these differently abled people and helps us all to affirm their inalienable dignity. Harold G. Koenig, MD, Director, Center for Spirituality, Theology, and Health, Duke University Medical Center

Post magically connects the creative, the metaphysical, and the existential with practical ethics. His insightful analysis of human vulnerability, the fragile nature of our memories, the call for compassionate care, and the voice of the caregiver is grounded in consciousness. Sangeetha Menon, NIAS Consciousness Studies Programme, Indian Institute of Science

Stephen Post writes tenderly, lovingly, and wisely about those among us with failing mental faculties. This is a breakthrough book, innovative, humane, inclusive, and uniquely significant. Post thoughtfully probes every imaginable practical ethical question that a caregiver might have based on his three decades of ethics consultation with families. This is one book that every caregiver and professional should read. Larry Dossey, MD, author of One Mind: How Our Individual Mind is Part of a Greater Consciousness and Why It Matters

With story and solid intellectual grounding, this masterpiece is vital reading for the dementia field and far beyond. Michael Splaine, Splaine Consulting / former Director, State Policy & Chapter Advocacy Program, Alzheimers Association

Dr. Stephen G. Post has greatly influenced Japanese care for deeply forgetful people, and he has inspired us to deliberate more about dignity, autonomy, identity, and authenticity. Masako Minooka, MD, Executive Director, Japan Association for Clinical Ethics, author of Ethics of Dementia Care in Japan

Dr. Stephen G. Post brings a hopeful and human perspective to those who think differently as they are living with cognitive changes while acknowledging the emotional and psychological impact on the family caregiver. His message and ethical approach to interactions support the enduring selfhood of the deeply forgetful, restoring dignity and honoring our shared humanity. Jed A. Levine, President Emeritus, CaringKind, The Heart of Alzheimers Caregiving

In this serious and uplifting book we can feel Posts passion for the dignity of deeply forgetful people, learn to notice and appreciate their expressions of continuing self-identity, and include them in our vision of a shared humanity. Drawing from years of experience, Post offers answers to the big ethical questions that Alzheimers presents and challenges us all to set aside hypercognitive biases and learn from these differently abled people as we come to see them anew. Joseph B. Martin, MD, Dean Emeritus, Harvard Medical School

dignity for deeply forgetful people

for deeply forgetful people

How Caregivers Can Meet the Challenges of Alzheimers Disease

STEPHEN G. POST

with a Caregiver Resilience Program by

Rev. Dr. Jade C. Angelica

Johns Hopkins University Press

Baltimore

Note to the Reader: This book is not meant to substitute for medical care, and treatment should not be based solely on its contents. Instead, treatment must be developed in a dialogue between the affected individual and his or her physician. The book has been written to help with that dialogue.

2022 Johns Hopkins University Press

All rights reserved. Published 2022

Printed in the United States of America on acid-free paper

9 8 7 6 5 4 3 2 1

Johns Hopkins University Press

2715 North Charles Street

Baltimore, Maryland 212184363

www.press.jhu.edu

Library of Congress Cataloging-in-Publication Data

Names: Post, Stephen Garrard, 1951 author.

Title: Dignity for deeply forgetful people : how caregivers can meet the challenges of Alzheimers disease / Stephen G. Post.

Description: Baltimore : Johns Hopkins University Press, 2021. | Includes bibliographical references and index.

Identifiers: LCCN 2021003212 | ISBN 9781421442495 (hardcover) | ISBN 9781421442501 (paperback) | ISBN 9781421442518 (ebook)

Subjects: LCSH: Alzheimers diseasePatientsCare. | Caregivers.

Classification: LCC RC523 .P668 2021 | DDC 616.8/311dc23

LC record available at https://lccn.loc.gov/2021003212

A catalog record for this book is available from the British Library.

Special discounts are available for bulk purchases of this book. For more information, please contact Special Sales at .

Courtesy of the author

Dr. Joseph M. Foley

19162012

This book is dedicated to Dr. Joseph Michael Foley, an outstanding clinical neurologist, educator, and academic leader who was noted for his kindness, his wonderful stories, and his gentle interest in every individual from whatever background or walk of life. Young Joe Foley was a standout at the Boston Latin School, received a full scholarship to the College of the Holy Cross, and went on to Harvard Medical School. He served as a navy medic in the Second World War, and he was awarded the US Bronze Star and the French Croix de Guerre for his actions to save others during the Utah Beach landing on D-Day. In 1961 he became director of the neurology division at Case Western Reserve University School of Medicine, where he stayed for the remainder of his illustrious career. He served as president of the American Academy of Neurology (19631965) and of the American Neurological Association (1974). He also chaired the first National Institutes of Health National Consensus Development Conference on Differential Diagnosis of Dementing Diseases (19861987).

In 1988, Dr. Foley recruited me from Fordham UniversityMarymount to Case Western Reserve University School of Medicine with the explicit challenge of developing a national program in medical ethics and the care of persons and families grappling with dementia. We worked together for two decades developing a clinical ethics consultation approach to caring for patients and their families, engaging them in countless grassroots dialogues so as to allow their voices to lead us. One of Clevelands most beloved clinicians, he served tirelessly at the Joseph Foley Elder Health Center managing cases of Alzheimers disease and other forms of dementia, improving the quality of lives and serving as one of the principal cofounders of the Alzheimers Association at the national and local levels. Dr. Foley was the most influential person in my professional life and in the life of many others, including Joseph B. Martin, MD, who rose to become the renowned dean of Harvard Medical School some years after completing his residency under Dr. Foley at University Hospitals of Cleveland.