Dignity for Deeply Forgetful People: How Caregivers Can Meet the Challenges of Alzheimer's Disease
288
Dignity for Deeply Forgetful People: How Caregivers Can Meet the Challenges of Alzheimer's Disease
288eBook
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Overview
For caregivers of deeply forgetful people: a book that combines new ethics guidelines with an innovative program on how to communicate and connect with people with Alzheimer's.
How do we approach a "deeply forgetful" loved one so as to notice and affirm their continuing self-identity? For three decades, Stephen G. Post has worked around the world encouraging caregivers to become more aware of—and find renewed hope in—surprising expressions of selfhood despite the challenges of cognitive decline.
In this book, Post offers new perspectives on the worth and dignity of people with Alzheimer's and related disorders despite the negative influence of "hypercognitive" values that place an ethically unacceptable emphasis on human dignity as based on linear rationality and strength of memory. This bias, Post argues, is responsible for the abusive exclusion of this population from our shared humanity. With vignettes and narratives, he argues for a deeper dignity grounded in consciousness, emotional presence, creativity, interdependence, music, and a self that is not "gone" but "differently abled." Post covers key practical topics such as:
• understanding the experience of dementia
• noticing subtle expressions of continuing selfhood, including "paradoxical lucidity"
• perspectives on ethical quandaries from diagnosis to terminal care and everything in between, as gleaned from the voices of caregivers
• how to communicate optimally and use language effectively
• the value of art, poetry, symbols, personalized music, and nature in revealing self-identity
• the value of trained "dementia companion" dogs
At a time when medical advances to cure these conditions are still out of reach and the most recent drugs have shown limited effectiveness, Post argues that focusing discussion and resources on the relational dignity of these individuals and the respite needs of their caregivers is vital. Grounding ethics on the equal worth of all conscious human beings, he provides a cautionary perspective on preemptive assisted suicide based on cases that he has witnessed. He affirms vulnerability and interdependence as the core of the human condition and celebrates caregivers as advocates seeking social and economic justice in an American system where they and their loved ones receive only leftover scraps. Racially inclusive and grounded in diversity, Dignity for Deeply Forgetful People also includes a workshop appendix focused on communication and connection, "A Caregiver Resilience Program," by Rev. Dr. Jade C. Angelica.
Product Details
| ISBN-13: | 9781421442518 |
|---|---|
| Publisher: | Johns Hopkins University Press |
| Publication date: | 05/31/2022 |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| Pages: | 288 |
| File size: | 2 MB |
| Age Range: | 18 Years |
About the Author
Stephen G. Post is the director of the Center for Medical Humanities, Compassionate Care, and Bioethics at the Renaissance School of Medicine at Stony Brook University. He is the author of The Moral Challenge of Alzheimer Disease: Ethical Issues from Diagnosis to Dying.
Table of Contents
Preface
Chapter One. In Praise of Caregivers and Dignity
Chapter Two. Hope in Caring for Deeply Forgetful People: Why It Matters and Where to Find It
Chapter Three. Answers to Sixteen Questions Caregivers Ask from Diagnosis to Dying
Chapter Four. The Seventeenth Question: Preemptive Physician-Assisted Suicide (PPAS) for Alzheimer's Disease: A Caution
Chapter Five. A Caregiver's Ethical Purpose: Preserving Dignity, Ten Manifestations of Care, and Respect for the Whole Story of a Life
Chapter Six. Respecting the Preferences of Deeply Forgetful People in Health Care and Research
Chapter Seven. "Is Grandma Still There?" The Mystery of Continuing Self-Identity
An Epilogue. North Wind
A Caregiver Resilience Program: Meeting Alzheimer's: Learning to Communicate and Connect
by Rev. Dr. Jade C. Angelica
References
Acknowledgments
Index
What People are Saying About This
Dr. Stephen G. 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!
With story and solid intellectual grounding, this masterpiece is vital reading for the dementia field and far beyond. I traveled with Stephen Post to nearly every state in the United States in the 1990s as we organized the first ethics and dignity conferences for thousands of caregivers and healthcare professionals through the Alzheimer's Association chapters. A founding member of the Association's National Ethics Committee, Stephen helped shape our national ethics guidelines and was among the first to bring medical ethics to caregivers throughout North America. A captivating and challenging public speaker, he stressed the continuity of selfhood in persons with dementia (not patients, not victims, not disposable). In this new book, our lifelong advocate and teacher updates his arguments for inclusion of 'deeply forgetful' people in our shared humanity.
The best summary of medical ethical issues in Alzheimer's disease from diagnosis to the end stage yet produced by anyone. Stephen G. 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.
"I am pleased to see that the noted author Dr. Stephen G. Post is addressing themes such as consciousness and interconnectedness in his new book, which will contribute to the flourishing of humanity."
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. As an extraordinary and impactful keynote speaker at our annual meetings of the Japan Association for Clinical Ethics, he has greatly influenced clinical ethical thinking in Japan about issues pertaining to the final stage.
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.
I am pleased to see that the noted author Dr. Stephen G. Post is addressing themes such as consciousness and interconnectedness in his new book, which will contribute to the flourishing of humanity.
In this serious and uplifting book we can feel Post's 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 Alzheimer's presents and challenges us all to set aside 'hypercognitive biases' and learn from these 'differently abled' people as we come to see them anew.
As a son who experienced up close the painful yet precious course of Alzheimer's over two decades, I wish I had had the benefit of Dr. Post's 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 humanity—and human potential—face to face.
As a son who experienced up close the painful yet precious course of Alzheimer's over two decades, I wish I had had the benefit of Dr. Post's 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 humanity—and human potential—face to face.—Charles Scribner III, author of Home by Another Route: A Journal of Art, Music, and Faith
Dr. Stephen G. 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 Alzheimer's Disease and Other Dementias
I am pleased to see that the noted author Dr. Stephen G. Post is 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 Alzheimer's disease from diagnosis to the end stage yet produced by anyone. Stephen G. 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 is a writer who can bring his soul into his words. In this book he 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 stories and solid intellectual grounding, this masterpiece is vital reading for the dementia field and far beyond. I traveled with Stephen Post to nearly every state in the United States in the 1990s as we organized the first ethics and dignity conferences for thousands of caregivers and healthcare professionals through the Alzheimer's Association chapters. A founding member of the Association's National Ethics Committee, Stephen helped shape our national ethics guidelines and was among the first to bring medical ethics to caregivers throughout North America. A captivating and challenging public speaker, he stressed the continuity of selfhood in persons with dementia (not patients, not victims, not disposable). In this new book, our lifelong advocate and teacher updates his arguments for inclusion of 'deeply forgetful' people in our shared humanity.—Michael Splaine, Splaine Consulting / former Director, State Policy & Chapter Advocacy Program, Alzheimer's 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. As an extraordinary and impactful keynote speaker at our annual meetings of the Japan Association for Clinical Ethics, he has greatly influenced clinical ethical thinking in Japan about issues pertaining to the final stage.—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 Alzheimer's Caregiving
In this serious and uplifting book we can feel Post's 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 Alzheimer's 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
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.
Post is a writer who can bring his soul into his words. In this book he 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.