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Dignity for Deeply Forgetful People

How Caregivers Can Meet the Challenges of Alzheimer's Disease

Stephen G. Post
with a Caregiver Resilience Program by Rev. Dr. Jade C. Angelica

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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…

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.

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Dignity for Deeply Forgetful People

Stephen G. Post
with a Caregiver Resilience Program by Rev. Dr. Jade C. Angelica

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Reviews

Reviews

Essential reading for all caregivers, family, and healthcare providers for deeply forgetful people.

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!

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 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.

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About

Book Details

Publication Date
Status
Available
Trim Size
6
x
9
Pages
288
ISBN
9781421442501
Illustration Description
2 b&w photos, 1 line drawing
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

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

Author Bios
Stephen G. Post
Featured Contributor

Stephen G. Post, Ph.D.

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.