There is a world of thoughtful, informative, and insightful things to read about Alzheimer’s and dementia and about caring for people who live with those diseases, and the number of videos, films and photo studies on the same topics is growing by leaps and bounds. We are currently organizing links to some of these materials within the following categories:
- Documenting Exemplary Care
- Verbal and Non-Verbal Communication
- Advocacy and Service Organizations
- Support for Care Givers
- Alzheimer’s, Dementia and the Arts
- Recording Lives with Alzheimer’s and Dementia
- Collateral Reading: Humanity in Extremis
Below is a list of resource materials for the “collateral readings” category that includes ten books, articles and essays. These readings stood out for Lisa and me in helping us understand the magnitude–and finitude–of what it might mean to embrace the lives of people living with Alzheimer’s and dementia. We can recommend all ten to you with that in mind. More resource materials will follow for all the categories above.
Collateral Reading: Humanity in Extremis
The following books and articles were among the most useful to Lisa and me in deepening our understanding of life with Leslie, her care-givers, and other memory care residents. We came across them one at a time and discussed a few of them together with considerable enthusiasm over a period of years. The first time we pulled them together was in preparing this web page. When we looked at the list we had created, however, they seemed a rather odd lot.
Only two books on the list are actually about Alzheimer’s or dementia, and both are photographic studies of exemplary care practices: Cathy Greenblat’s, Alive with Alzheimer’s and Love, Laughter and Loss. These books are extraordinary illustrations of the experience of memory care residents and how expert and talented care-givers can help residents live fulfilling lives. We recommend both books highly to anyone who knows and cares for someone living with Alzheimer’s or dementia.
Two other works on this list provide evocative and informative accounts of brain functions and dysfunctions (Alice Flaherty’s, The Midnight Disease, and Jill Bolte Taylor’s Stroke of Insight), but neither focuses on neurological degeneration among the elderly. Anne Lamott refers briefly to residents in a memory care home in Bird by Bird, but focuses on the challenges and rewards of writing about such a place–and understanding what it means to be fully alive–not on the challenge of memory care itself. Erving Goffman’s treatment of total institutions in Asylums might seem closer to the mark, but his work focuses on issues of social organization and social life, not degenerative diseases such as Alzheimer’s and dementia.
Among the remaining authors are two anthropologists, a journalist and novelist, a psychologist, a poet and the Dalai Lama, none of whom wrote about Alzheimer’s or dementia in the works we’ve listed.
The article by George Spindler is a treatise on the situational and enduring self that questions the existence of the latter. In his “metalogues,” Gregory Bateson teases apart the certitude of conventional thinking about our experience of the world, and, by doing so, posits a more complex understanding of what it means to be human.
Paul Ekman and the Dalai Lama examine prospects for stretching the scope of empathy from similar minded intimates to dissimilar minded friends–and beyond, even to enemies–in a world where individual and cultural differences are met frequently with fear and hostility. Emmanuel Carrere describes what grace and love might look like in the aftermath of catastrophes that reduce human life to its essentials. And the poet Gary Snyder examines how attending to “the wild” of the world can help us embrace the uncertainty, ambiguity and damnable uncontrollableness of life itself.
Apart from Cathy Greenblat’s two photography books, none of these books and articles fit neatly within the other Resource categories we were working with, so we lumped them together as “Collateral Reading.” We could have left them off our Resources list, but these were the books we’d valued and enjoyed the most. What made reading and talking about them so rewarding? Did they have anything in common? If so, what was it?
We’re not done mulling over those questions, but here’s a provisional answer: While none of the authors other than Cathy Greenblat wrote about Alzheimer’s or dementia, all of them wrote thoughtfully about the human condition, and they did so in ways that broadened the moral community, rather than narrowing it. This broadening occurred by acknowledging the complexity of human consciousness or the mysteries of the self, both elaborated and laid bare. It also occurred by describing the magic, science and art of experiencing life and death, recognizing the dignity of not knowing, or honoring the rewards people can find in taking even a small step towards greater humanity from wherever they happen to be at the time.
So yes, only two of these works focus on Alzheimer’s or dementia. But they all affirm a sense of humanity that’s spacious enough to include people living with Alzheimer’s or dementia, and nourishing enough for them to live there with us and us with them. That’s more than enough to warrant inclusion in our Resources section, so here they are!
Works Cited:
Gregory Bateson, Steps to An Ecology of Mind (1985), especially the “Metalogues”
Emmanuel Carrere’s Lives other than my own: A Memoir (2014)
Paul Ekman and the Dalai Lama: Emotional Awreness: overcoming the obstacles to psychological balance and compassion. (2008)
Alice Flaherty’s treatise on the neurology of writing, language and the urge to communicate: The Midnight Disease: the drive to write, writer’s block and the creative brain (2005).
Erving Goffman: Asylums: essays on the social situation of mental patients and other inmates, (1961), especially “The moral career of mental patients,” and “The underlife of total institutions.”
Cathy Greenblat’s two photography—rich books about Alzheimer’s: Alive with Alzheimer’s (2004) and Love, Loss and Laughter: seeing Alzheimer’s differently (2014).
Anne Lamott, Bird by Bird: some instructions on writing and life (1995)
Gary Snyder, The Practice of the Wild (2010)
George and Louise Spindler: “The situated self” from “The self and the instrumental model in the study of cultural change” (1989)
Jill Bolte Taylor, My Stroke of Insight: a scientist’s personal journey (2008)