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.
With a workshop appendix focused on communication and connection, "A Caregiver Resilience Program," by Rev. Dr. Jade C. Angelica.

Product Code: 8895
ISBN: 9781421442501
Format: Paperback / softback
Publisher: Johns Hopkins University Press
Pages: 288
Published Date: 05/31/2022
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Price: $26.95

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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Contents

Preface

[1] In Praise of Caregivers and Dignity
The Ultimate Reality of Human Interdependence
Seekers of Deeper Justice
Learn First from the Caregiver
Noticing Human Dignity
“Deeply Forgetful People”
Words of De-dignification
Connecting with Art and Music

Three Cultures of Dignity
The Confucian Approach in China and Japan
Love at Work in Poverty: Leo and Sister May
An Ethics of Care
Caregiver Questions as Alzheimer’s Unfolds

[2] Hope in Caring for Deeply Forgetful People
Why It Matters and Where to Find It

Hope in Faith: Caregiver Orien Reid
Hope in Biomedical Model
Hope in Being Open to Surprise
Hope in Man’s Best Friend: The Alzheimer’s Service Dog
Hope in Twelve Aspects of the Enduring Self
Hope in the Moments of Joy
Conclusions

[3] Answers to Sixteen Questions Caregivers Ask from Diagnosis to Dying
Alzheimer’s as a Cause of “Dementia”
Answers to Sixteen Questions
Q1. Should we break the news to Grandma?
Q2. How quickly will I decline?
Q3. Are there really any effective drugs to stop this disease?
Q4. Can tender loving care make a difference or is it all just biological?
Q5. Should we tell other people about my diagnosis?
Q6. Will “I” still be there, more or less, despite the silence or confusion?
Q7. Will I “suffer”?
Q8. Do I really want to continue to treat my heart failure or diabetes or dialysis or cancer as this disease unfolds?
Q9. Will I be a burden to those who take care of me?
Q10. Is genetic testing a good idea?
Q11. Should I file a living will or a durable power of attorney for health care?
Q12. Will my remaining ability to make choices be respected?
Q13. Will I be physically or chemically restrained?
Q14. Can I drive?
Q15. Should I participate in research?
Q16. Can I avoid technology and tubes so I can just die naturally?
Conclusions

[4] The Seventeenth Question: Preemptive Physician-Assisted Suicide (PPAS)for Alzheimer’s Disease
A Caution

Two Cases of PPAS
Grandma J
Janet Adkins and Dr. Kevorkian

Sources of Ambivalence: Five Reasons to Question PPAS
Reason One: Do you know how this disease will progress?
Reason Two: What kind of legacy is left behind?
Reason Three: What about interdependence?
Reason Four: Can we learn to notice the expressions of selfhood?
Reason Five: Isn’t hospice good enough?

Why Not Legalize PPAS in the United States?
Caution One: Will PPAS diminish social commitment to long-term care?
Caution Two: Will PPAS spill over into other “nonterminal” illness categories?
Caution Three: Is there a risk of going from voluntary to nonvoluntary PPAS and even euthanasia?
Conclusions

[5] A Caregiver’s Ethical Purpose
Preserving Dignity, Ten Manifestations of Care, and Respect for the Whole Story of a Life

Dignity
Four Stories of Enduring Dignity
Jim’s Glorious Twig
Jan’s Awesome New Snowflake
Ruth’s Deep Gratitude
Clint’s Cowboy Hat

Acting against Indignity and Humiliation
The Nazi Doctors and the Perils of Forgetfulness
The Stark Humiliation of Mrs. H
Dignity in the Parking Lot

The Circle of Care: Ten Manifestations
The Way of Celebration
The Way of Helping
The Way of Forgiveness
The Way of Carefrontation
The Way of Mirth
The Way of Respect
The Way of Attentive Listening
The Way of Compassion
The Way of Loyalty
The Way of Creativity

Respect for the Whole Story of a Life
The Example of Sexual Intimacy and Integrity
Additional Core Values in Caregiver Ethics
Breaking Free from Hypercognitive Personhood
Is a Deeply Forgetful Person a Person? Yes.
Caring Communication
Can We Learn to Communicate?
Conclusions

[6] Respecting the Preferences of Deeply Forgetful People in Health Care and Research
with Phyllis Migdal, MD, MA

Everyday Preferences
Health Care Decisions
Reconceptualization: Compassionate Autonomy
See a Lawyer
Research Ethics

[7] “Is Grandma Still There?”
The Mystery of Continuing Self-Identity

“Paradoxical” or “Terminal Lucidity”
On Spirituality
A Trip to Bangalore
Fifteen Focus Groups
A Speculative Model of Continuing Selfhood and Dignity
Human Consciousness and Post-Materialism
Hope in Deep Self-Identity
A Pastoral Conclusion

An Epilogue: North Wind
A Caregiver Resilience Program
Meeting Alzheimer’s Rev. Dr. Jade C. Angelica

References
Acknowledgments
Index

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

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

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

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

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