Dignity for Deeply Forgetful People
In Dignity for Deeply Forgetful People: How Caregivers Can Meet the Challenges of Alzheimer’s Disease (John Hopkins University Press; May 31, 2022), was written to help caregivers and to make a new language that allows our culture to value seeing and connecting with the whole person—their core personality, preferences, emotions, creativity, and capacity for joy—despite the limitations of dementia. An advocate for “deeply forgetful people” since the early 1990s, I invite caregivers and professionals to notice the continuing self-identity that always remains intact below the surface of people with dementia. We are not in any essential way different from them unless we choose to overvalue linear rationality and independence, to overlook their inalienable human qualities, and to pretend that we are not all ultimately vulnerable and interdependent. With a powerful endorsement from His Holiness the Dalai Lama, the book title says it all: Dignity for Deeply Forgetful People. I avoid the word “dementia” because it is a negative term, one exclusively about the decline from a former mental state that invites oft-heard negative metaphors such as “gone, husk, shell, absent.” I prefer the term “deeply forgetful people” as a language of inclusion, placing us all on a continuum of a community of human dignity.
How can we approach a "deeply forgetful" person so as to notice and affirm their worth and dignity? How can we all become open to their surprising expressions of self-identity? As a culture how can we overcome the adverse influence of "hypercognitive" values, with their hurtful emphasis on human worth as a matter of cognitive strength and memory? This bias is sadly responsible for the mistreatment of this population, including the injustice of providing them and their devoted caregivers with mere social-economic “scraps” or “leftovers.”
Drawing on evocative caregiver vignettes, this book affirms a new appreciation for the emotional, creative, musical, artistic, and underlying selfhood of these "differently abled" full human beings. Such a shift allows forgetful people to teach us compassionate care, and for family members and professionals to find hope in noticing self-identity. The term “paradoxical lucidity” stresses awesome moments of remarkable insight that are stimulated by music, art, nature, smell, and even a dementia dog. Dignity rejects any philosophy that derives moral worth from possessing the rationality of what we do rather than from the symbolic rationality of who we are. Deeply forgetful people will identify with a meaningful symbolic object all the way to the very end stage, knowing that their identity is connected with a doll they clutch or a cowboy hat they wear or rosary beads they pray. Thus, the book affirms a role for pastoral care even in advanced illness and suggests that there is something more to the human mystery than materialism and neurology can account for, for just as we have brains that exist in a material world we have an essence that is more than matter.
Grounded in his own caregiving experience, Dignity for Deeply Forgetful People is also immediately actionable. I am widely recognized as a clinical and family consultant providing practical moral wisdom for caregivers. For three decades, I conducted several hundred community dialogues arranged by Alzheimer’s programs across the US and around the world, including Japan and India. In everyday language, I respond to caregivers and affected loved ones on questions they raise:
- Q1. Should we break the news to Grandma? Should we use the “A” word and when?
- Q2. How quickly will I decline?
- Q3. Are there really any effective drugs to stop this disease?
- Q4. Can our tender loving care make a difference and even slow down progression, or is it all just genetically pre-determined?
- 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”? Will I be overtreated against my will?
- 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. Can I avoid be physically or chemically restrained?
- Q14. Can I drive and for how long?
- Q15. Should I participate in research?
- Q16. Can I avoid technology and tubes so I can just die naturally?
- Q17. What is the secret to avoiding the intensive care unit and hospitalization in favor of hospice?
- Q17. What about the option of pre-emptive assisted suicide in Europe and Canada?
STEPHEN G. POST, PhD, is Director of the Center for Medical Humanities, Compassionate Care, and Bioethics at Stony Brook University Renaissance School of Medicine, where he also serves as Professor of Family, Population, and Preventative Medicine and Head of the Division of Medicine in Society. He is an elected Member of the Medical and Scientific Advisory Board of Alzheimer's Disease International and one of only three recipients of the Alzheimer's Association Distinguished Service Award. His first book, The Moral Challenge of Alzheimer’s Disease (Johns Hopkins University Press, 2000) was hailed as a “medical classic of the century” by the British Medical Journal. He has been featured internationally in the media, including The Daily Show. Post received the United States Congress Certificate of Special Recognition “In Recognition of Outstanding Achievement” (28 November 2012). He shared the Pioneer Medal for Outstanding Leadership in HealthCare with Dr. Edmund D. Pellegrino, MD (2012).
An Epilogue presents a caregiver resilience workshop by Rev. Dr. Jade Angelica, a writer, spiritual director, and dementia educator. She designs and leads workshops, presentations, church and community services, and professional trainings through Healing Moments for Alzheimer’s, the non-profit organization she founded in 2007. Jade is the author of Where Two Worlds Touch: A Spiritual Journey Through Alzheimer’s Disease. Her articles about Alzheimer’s and dementia have appeared in The Journal of Pastoral Care & Counseling, Presence, Alzheimer’s & Dementia, and The Journal of Religion, Spirituality and Aging. Her workshop, Meeting Alzheimer’s: Learning to Communicate and Connect, has been studied for its remarkable success. Jade’s most important and most rewarding ministry, to date, has been caring for her mother, Jeanne, who died from Alzheimer’s in 2011.