Timothy M. Krahn and Walter Glannon reflect on the graphic novel Wrinkles and what it teaches us about fears of Alzheimer’s and aging.
Alzheimer’s disease, the most common form of dementia, has become the most feared disease—more so than stroke, heart disease, or even cancer. The fears associated with Alzheimer’s are a complicated mix of medical, social, familial, and personal factors.
For example, we fear that we will lose our autonomy under the threat of disease and aging with subsequent vulnerability to social neglect and exclusion. We worry that we may not be cared for when we are elderly and become less capable. We are afraid of having to confront questions about dying and death.
These fears are incredibly daunting. When one of us (Krahn) was an impressionable youth, a very intelligent, middle-aged professor said: “If ever I end up like that [meaning demented] just throw me over a cliff.” This sort of statement is not uncommon among persons who fear dementia. But it’s likely that far fewer persons who say something like this would actually deal with their fear through some form of assisted suicide. The more problematic interpretation of the professor’s statement is his perception that such a life is necessarily a burden to oneself and others.
These days researchers are challenging some of the fears and stereotypes by moving “beyond the individual level and focus[ing] on the importance of strengthening communities.” They are “attun[ing] us to the fact that people with dementia (or other significant cognitive or physical impairments), given the right social and community supports, are capable of resilience and can continue to live meaningful lives and maintain a sense of personhood.” This is not to deny the hard realities that many who face Alzheimer’s and other dementias will eventually need nursing home care, which, as a permanent placement, is seen by many as a fate “worse than death.” But research is helping us to understand, and aim for, quality of life in nursing homes instead of presuming that living in one “is de facto a dependent and devalued form of life.” As Rosemary Kane explains, “long term care is a subject that should be capable of engaging the imagination positively.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.