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Dignity for Deeply Forgetful People

How Caregivers Can Meet the Challenges of Alzheimer's Disease

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.

About the Authors

Stephen G. Post (STONY BROOK, NY) 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.

Endorsements

"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. Completely readable for caregivers and professionals, this book is ased on 30 years of devoted work with caregivers and individuals with dementia. Stephen G. Post is recognized worldwide as the foremost medical humanist and ethicist writing on this vitally important topic. His wonderfully written Dignity for Deeply Forgetful People awakens us to the continuing underlying 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. His message reflects the view that we are conscious in spite of what our brains may be doing, and that it is human consciousness that is fundamental to our dignity, even if our cognitive strengths have weakened. The surprising moments of 'paradoxical lucidity' that caregivers often observe and describe teach us never to assert that the person is not still there underneath the communicative losses. The ultimate nature of mind remains a mystery, consistent with emerging neuroscience, as Post shows. This is a breakthrough book, innovative, humane, inclusive, and uniquely significant. In addition, 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

"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. In Canada he was one of only two Americans to serve on their National Ethics Committee, co-leading a movement of public engagement across every province. Post 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. 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, Alzheimer's Association

"Dr. Stephen G. Post has greatly influenced Japanese care for deeply forgetful people from daily living to the use of feeding tubes, 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, especially in helping us to realize that death with dignity does not require artificial nutrition and hydration."

- 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
Johns Hopkins University Press
From 17

9781421442495 : dignity-for-deeply-forgetful-people-post-angelica
Hardback
May 31, 2022
$64.95 USD
9781421442501 : dignity-for-deeply-forgetful-people-post-angelica
Paperback / softback
May 31, 2022
$26.95 USD
9781421442518 : dignity-for-deeply-forgetful-people-post-angelica
Electronic book text
May 31, 2022
$26.95 USD

Other Titles by Stephen G. Post

The Moral Challenge of Alzheimer Disease, second edition

Stephen G. Post
Nov 2002 - Johns Hopkins University Press
$30.00 USD - Paperback / softback
$30.00 USD - Electronic book text

Inquiries in Bioethics

Stephen G. Post
Sep 1993 - Georgetown University Press
$56.95 USD - Hardback

Dementia and Aging

edited by Robert H. Binstock, Ph.D., Stephen G. Post, Ph.D., and Peter J. Whitehouse, M.D., Ph.D. - foreword by Robert N. Butler
Sep 1992 - Johns Hopkins University Press
$28.00 USD - Paperback / softback

Other Titles in HEALTH & FITNESS / Diseases / Alzheimer's & Dementia

The Busy Caregiver's Guide to Advanced Alzheimer Disease

Jennifer R. Stelter, PsyD - with Rachael Wonderlin
Oct 2021 - Johns Hopkins University Press
$44.95 USD - Hardback
$19.95 USD - Paperback / softback
$19.95 USD - Electronic book text

American Dementia

Daniel R. George, PhD, MSc, and Peter J. Whitehouse, MD, PhD
Sep 2021 - Johns Hopkins University Press
$29.95 USD - Hardback
$29.95 USD - Electronic book text

Finding the Right Words

Cindy Weinstein - with Bruce L. Miller, MD
Sep 2021 - Johns Hopkins University Press
$22.95 USD - Hardback
$22.95 USD - Electronic book text