Tuesday’s (1/20/2015) New York Times article “Complexities of Choosing an End Game for Dementia” provides a good opportunity to reflect on the complex ethical questions surrounding dementia. The piece focuses on 88-year-old Jerome Medalie who has stipulated in his advance directive that if he develops dementia, he refuses “ordinary means of nutrition and hydration.” Once certain conditions set in—such as when he is no longer able to “articulate coherent thoughts and sentences”—Medalie directs that no one try to spoon-feed him or offer him liquids. “If I’m not me, I don’t want to be,” he declared.
The article uses Medalie’s choice as an entry point to discuss larger issues related to VSED, short for “voluntarily stopping eating and drinking,” and its application to persons with dementia. Dena Davis, a bioethicist cited in the article, proposes “pre-emptive suicide” as a viable solution to the problems of dementia. She explains the concept in more detail on her blog:
I remain convinced that once you are in even the early stages of dementia, it is too late to take action. That’s why I argue for pre-emptive suicide. I am hoping that the new biomarkers that seek to define your risk for Alzheimer’s before you become symptomatic, can help people who think like I do to “get out while the getting’s good.’”
Rather than debate advance directive particulars, I am more interested in what lurks behind these end-of-life dementia debates. In particular, I am troubled by what I sense as an especially deep and pervasive negativity toward dementia. While Davis’ recommendation of pre-emptive suicide represents an extreme on the “negativity spectrum,” her general perspective—that life with dementia is not worth living—is not unusual. Recently, when I told a friend that I am writing a book on spirituality and dementia, she replied, “Oh, my grandfather had dementia. I told my father if he ever gets dementia, not to worry. I’ll take him on a nice walk to the edge of a cliff and…” She gave a quick pushing motion.
Bioethicist Stephen Post uses the term “dementism” to describe the prejudice against the deeply forgetful. Dementism reflects a deep cultural sickness that combines a bias against old age (ageism) with a bias against impaired cognition (cognitivism). The result is a highly pessimistic and reductionist attitude toward persons with dementia. They are their disease; they are shells, husks, the “living dead”; they can have no quality of life. The disease is “the death that leaves the body behind,” which feeds the notion that dementia creates a category of sub-humans, not unlike zombies.
I suspect the social response to dementia creates as much suffering as the disease itself. As Susan Sontag observed in her Illness as Metaphor, up until recent decades, cancer was “not just a lethal disease but a shameful one.” Now, there is a new disease, felt to be more undesirable, more lethal, more shameful than cancer. Alzheimer’s is the new bogeyman—not only lethal but also considered shameful.
Sadly, persons with dementia and their care partners often find themselves forgotten by their communities and friends at the exact time when they need the most care. Pastoral theologian John Swinton says the problem is not so much that people forget, it is that they are forgotten. The problem isn’t simply their deficits—it is the unexamined prejudices of those around them.
As a chaplain at a nursing home, I spent the past seven years ministering to persons who have varying levels of dementia. For over a decade, my grandfather lived with dementia. These professional and personal opportunities to know people with dementia have deepened my appreciation for the challenges they face, their honesty and affection, and their desire to connect with others in a place beyond words. I’ve witnessed what they often endure—ignored, undervalued, talked over, treated like children, rushed pass—no longer treated as the individuals they are, but as Alzheimer’s “victims.”
The distresses caused by dementia are not simply determined by the disease’s pathology. We know that the social environment greatly contributes to a person’s sense of peace or distress, of worth or worthlessness. We must start by taking seriously the kind of social climate we help create for persons with dementia—rather than rushing to life-ending solutions.
I am certainly not exempt from dementism. It is part of my cultural inheritance, too. Still, I am hopeful. I am hopeful that together we can move beyond dementism to create a more dementia-inclusive world.