Lynn Casteel HarperTuesday’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.
Hi, I am an AGNG 200 student at Erickson School of Aging. Thank you for the great article about dementism. I agree that we need to find ways we could socially accept and help people with dementia more. In my Aging class, I have been learning about dementia, such as their causes, symptoms, what we could do, and etc. for couple weeks. And since there is no possibility for patients to go back to a state when they did not have dementia, there should be at least people like you and many others who care for them and search ways to help them. This blog’s articles really gives me great insights.
I agree completely that society’s – our – responses = and lack of responses – make coping with the far end of dementia even more difficult. And the desire to turn away for those who still live in the land of the well ( another Sontag reference) means that it is easier to refuse to provide government supported services to assist caregivers and their patients. { In the “after all, it’s their fault for not planning” category]. given the number of relatives who avoid spending tie with relatives with dementia, I guess it is no surprise that providing care is not a priority to others.
The idealized picture of the adult daughter ( usually, not always) completely forgoing life for 10 or more years to handle care of a parent who is living much longer now is not sane.
Nursing homes handle increasing numbers of people who are incapable, ultimately, of communicating, eating, or doing anything at all for themselves without one on one assistance. Some people are in continual distress – with not a clue or chance of relief i until they die.
And no nursing homes ( let’s get away from damning all of them for doing what the rest of us do not want to face – they are not all horrible) – so no nursing home can possibly provide the most individualized care. Some in other countries do a better job of normalizing surroundings and activities. But that is with strong community support and government subsidies for care, and for well planned nursing centers. We don’t have that in the US.
The dying away by millimeters – not only with the more in-your face deterioration of later Alzheimer’s , but with the slow changes in vascular dementia ( ends of the dementia spectrum) is how most of us will die. It’s slow and involves increasing loss of function – the limbs, the inner organs, the brain..Personally, I do not want to die over a 5 year, or longer, period in a nursing home. And that is the end scenario with the highest probability.
We need reverence for individuals, whatever their disability, but we also need protection and extension of individual choice, including the choice to die faster. Somehow, it is necessary to reach a point where we can honor both approaches. I am suspicious when many of the most vehemently against assisted suicide are from the same group that is adamantly opposed to extending real assistance to caregivers. What has been learned in areas which allow for euthanasia and/or assisted suicide ( not, generally, for the demented because they cannot be considered informed) is that for many, assurance of pain relief and the ability to have control convince many who sought to die to live instead, convinced that they would not be in pain or cause distress to their loved ones.
So to wrap this up, in the end I see demanding a choice to commit suicide not as opposite, but as a complement to being able to expect proper care for the living.
I don’t think the author provides any evidence, other than her subjective impressions, to support her claims. It certainly is worth questioning whether a person with severely impaired cognition has a “life worth living”, but just because we think we can see value in a person’s life doesn’t mean that person can, and we have no idea what it is really like to be that person. It may be that, because she is a helping kind of person–a person whose life’s work is by its very nature based on service to those in need—the value of the life of a patient with Alzheimer’s comes entirely from her own beliefs and not from the patients’ experience of life. I feel she is projecting her own perspective onto vulnerable and relatively helpless people who have lost the ability to communicate.
Thanks for this well elaborated article on dementia. In Africa uganda in particular this condition (dementism) is not yet accepted as an age related illness and Older with such problems are associated Spirits or Demonic. Thus addressing it one must consult the traditional healers who have powers to invoke spirits for healing.
Thank you for meaningful words about dementism. I would like to send you a copy of our book,’Seasons of Caring, published by Clergy Against Alzheimer’s if you would send me your address. I, too, am an advocate for persons with dementia and their caregivers, author of No Act of Love: The Spirituality of Caring for Persons with Dementia. My web sit is: http://richardmorganauthor,com.
Richard Morgan
Thank you! My mom died peacefully 11 years into her dementia surrounded by a village of caregivers who still miss her. My understanding of aging, decline and death was transformed by this experience. Our culture villifies the condition and with it the people who have it. I feel the Alz Assoc with its End Alz slogan is a participant and enabler of this situation and I want nothing to do with it. The very American attempt to control how one ages, declines and dies is an indication of a culture devoid of human-ness.
Beautifully stated, Wendy!!!
So very true Wendy. The phrase “loss of personhood” is commonly used in describing those who are cognitively changed. It seems people attribute disease of robbing ones personhood, as opposed to realizing that it is people that rob personhood.