Dignity for Deeply Forgetful People: How Caregivers Can Meet the Challenges of Alzheimer’s Disease

SUMMARY: Caregivers Can Meet the Challenges of Alzheimer’s Disease (also the title of a recently published book, John Hopkins University Press, May 31, 2022), Dr. Post shifts the focus to 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, Post teaches caregivers and professionals how to notice the continuity of self-identity that always remains, and how to communicate effectively along the spectrum of forgetfulness. “We are not in any essential way very different from them,” Post drives home, “unless we choose to overvalue linear rationality and independence, to overlook their many other intact human qualities from consciousness to creativity, and to forget that we are all equally vulnerable and interdependent.” With a powerful endorsement from His Holiness the Dalai Lama, the book title says it all: Dignity for Deeply Forgetful People. Post avoids the word “dementia” because it is a negative term, one exclusively about decline from a former mental state that invites oft-heard negative metaphors such as “gone, husk, shell, absent.” Post uses the term “deeply forgetful people” as a language of inclusion, placing these individuals on a spectrum of forgetfulness within the 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, which reduce human worth to cognitive strength, memory, and self-reliance? Post affirms a new appreciation for the emotional, spiritual, creative, musical, artistic, and underlying integrity of these "differently abled" yet full human beings. His phrase “paradoxical lucidity” stresses the awesome moments of remarkable insight that are stimulated by music, art, nature, smell, and even a dementia dog. Deeply forgetful people will often identify with a meaningful symbolic object all the way to the very end of life, knowing that their identity is connected with that old doll they clutch or that cowboy hat they wear or those rosary beads they still pray over. This symbolic rationality has to do with who we are; it the reason of our “being” rather than of our “doing,” and it can be skillfully awakened even in advanced illness with the help of loved ones, the activities of pastoral care, and of course by meaningful music.