On Vanishing. Lynn Casteel Harper
eleven and a half years before his death, he could not keep score in a simple dice game we played. This singular memory helps me to date the duration of his dementia. At the time of Dorothy’s death, Jack was living in an assisted living facility that specialized in memory care. Jack would soon thereafter move to a nursing home where he lived his last two years. If not in bed, he was in his wheelchair at a table with other old war veterans in wheelchairs. He said very few words.
When I told a minister friend about my grandfather’s move to the nursing home, she reflexively responded: Oh, so he’s gone. Her words reminded me of another friend, who told me that she promised her father that if he ever gets dementia, not to worry, she will take him on a “nice walk to the edge of a cliff.” She then made a quick pushing motion—gone. It seems persons with dementia are more subject to being pronounced gone—to being pushed off the proverbial cliff—than persons with other kinds of progressive illnesses. While my grandfather’s life, in many respects, had “shrunk,” he certainly was not gone to those who knew and loved him. But I felt the push toward his erasure, and I wanted to know who or what was doing the pushing.
A couple of weeks after Dorothy’s memorial service, I attended a workshop on spirituality and dementia, where I first learned of the late British social psychologist Tom Kitwood, who, in the 1980s and ’90s, had developed a new model for providing care to persons with dementia. Challenging the old culture of care that viewed dementia patients as problems to be managed, as bodies in need of physical care and little else, Kitwood argued that people with dementia should be engaged with as complex individuals living within complex social environments. From what I gleaned at the workshop, I sensed that his approach to dementia might help me better understand what contributes to the invisibility of persons with dementia.
In the coming months, I read his seminal work, whose title alone attracted me: Dementia Reconsidered: The Person Comes First. It seemed telling that a reconsideration of dementia would entail something as seemingly obvious as centering the person—as giving persons preeminence in their own lives. Most of the research on dementia had ignored the impact of the social environment on people with dementia, and on their disease process. Kitwood offered a profound corrective. He observed the ubiquity of what he called “malignant social psychology” in relation to persons with dementia. Through close observation of daily interactions between caregivers and dementia patients, Kitwood identified seventeen malignant elements that promote the depersonalization of persons with dementia: treachery, disempowerment, infantilization, intimidation, labeling, stigmatization, outpacing, invalidation, banishment, objectification, ignoring, imposition, withholding, accusation, disruption, mockery, disparagement.
Kitwood argued that care settings shaped by malignant social psychology can actually accelerate neurological decline. He critiqued the “standard paradigm” of dementia, which in his view often blamed only the organic progression of dementia for the decline that sufferers experience. The silent, stigmatizing partner in this dynamic—that is, the cultural bigotry against both cognitive impairment and old age—gets off scot-free. The process of dementia, according to Kitwood, involves “a continuing interplay between those factors that pertain to neuropathology per se, and those which are social-psychological.” Herein lies the frightening and hopeful prospect: the person with dementia does not simply disappear on her own. It is not just a matter of the private malfunctioning of her private brain. It has to do with our malfunctioning, our diseased public mind.
Not long after I read Kitwood, I walked into the program room and found Ruth yelling and pounding her fists on the table. She had recently moved to the dementia unit, where I had met her a few days before during my rounds. At that time, Ruth had been unhappy about her move but not distraught like she was now. Seeing my shock, an activities staff member explained, “She’s been terrible to us—yelling out bad things at everyone who walks by. She said she was hungry, that she wanted lunch. But she just ate lunch, so I got her pudding for a snack. And she threw the pudding at me, and it splattered all over the floor. Then she called me a bad name. I’m done; I’m just done.” She turned her back to Ruth and walked away.
Understanding Kitwood’s malignant social psychology helped me unpack this brief encounter. There was infantilization: Ruth was not permitted the food of her choice, because she “just ate lunch.” There was ignoring and objectification: the staff member talked over and about the resident as if she were not there, as if she were a nonentity. There was imposition: overriding Ruth’s stated desire, the worker insisted she must have a snack instead of a meal. There was disparagement: the staff member was clearly angry with Ruth, blaming her for her bad mood. There was withholding and banishment: the staff member left Ruth, declaring, “I’m just done.” Ruth was left alone. Malignancy now hemmed her in. I watched a dining room staff member approach Ruth. “What would you like?” he asked. “A sandwich or something,” she replied. He returned from the kitchen with a peanut butter and jelly sandwich. Ruth immediately bit into it. “Thank you, I never thought I’d be this happy with a peanut butter and jelly sandwich,” she said.
By this relatively simple act, the staff member had unraveled a bit of the malignancy, but the task of undoing malignant social psychology cannot rest only on direct caregivers. Kitwood understood malignant social psychology as “in the air”—part of our cultural inheritance, not a phenomenon to be blamed on (or solely remediated by) individual caregivers. Malignant responses to dementia, in Kitwood’s analysis, revealed tragic inadequacies in our culture, economy, and medical system, which often define a person’s worth in terms of financial, physical, and intellectual power.
That certain mental powers determine one’s moral standing reflects what the bioethicist Stephen Post calls our culture’s “hypercognitive” values, a phrase he first used in his 1995 book, The Moral Challenge of Alzheimer Disease. Revisiting the concept in a 2011 article, Post highlights the “troubling tendency,” in our hypercognitive culture, to “exclude human beings from moral concern while they are still among the living.” Our particular veneration of cognitive acumen generates “dementism”—a term Post uses to describe the prejudice against the deeply forgetful.
Transcending the acts and intentions of discrete individuals, systemic dementism exists in structures that overlook, minimize, or actively undermine the needs of persons with dementia. For example, assisted living facilities, in which approximately seven out of ten residents have some degree of cognitive impairment, are underregulated—leaving people with dementia particularly vulnerable. A severe shortage in the United States of geriatricians, who are often best equipped to provide ongoing clinical support for older persons with dementia, signals a prejudice in the medical system.
The overuse of psychotropic drugs, which carry risky side effects for elders with dementia, is another sign of dementism. Unlike medicines used to treat the cognitive symptoms of dementia, these psychotropic drugs, which include antidepressants, antipsychotics, anxiolytics for anxiety, and antiseizure medications, are used to manage certain behaviors associated with dementia—and are not approved by the FDA for this specific use. Antipsychotic medications are particularly hazardous for older adults with dementia, greatly increasing the likelihood of stroke and death. A study published in 2016 in International Psychogeriatrics revealed that only 10 percent of psychotropic drug use among people with dementia is fully appropriate. And yet pharmaceutical companies have pushed the use of such medications for persons with dementia. In 2013, Johnson & Johnson paid a $2.2 billion settlement for the improper promotion of Risperdal, a drug designed to treat schizophrenia and bipolar disorder, for use with dementia patients, despite the company’s knowledge of its serious health risks for this population.
As I consider religious institutions within my own Protestant circles, I notice how rarely seminaries offer much if any training to future pastors about aging and dementia. Churches often pump tremendous resources into ministries for young families and children, with little attention to elders—let alone elders with dementia. Progressive churches like mine, which faithfully fight for racial, gender, and economic justice, often fail to take into account ageism and the plight of people with cognitive impairment. Redressing malignant social psychology is not as easy as serving peanut butter and jelly sandwiches. Remediation is needed at every level.
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