As recently as 1982, the late Robert Terry, MD, a groundbreaking neuropathologist working specifically on Alzheimer’s disease, was quoted in the Washington Post, saying:
All diseases are depersonalizing to some extent. But you’re still human…But a person with a serious dementia is no longer human. He’s a vegetable. That’s devastating. Fearsome. Terrifying to anyone who’s ever seen it—the thought that that could happen to you.
Although Terry knew Alzheimer’s up close under the microscope, I question how close he got to actual people who were living with the disease. He did, however, zero in on the greatest fear many of us have. Views like Terry’s spread, augmented by appeals to fund Alzheimer’s research that played up the tragedies of memory loss and failure to recognize family members.
Such was the Zeitgeist in the 1980s when my mother began to show signs of dementia. Her growing anxiety about her failing memory was surely fed by descriptions like Terry’s.
An acquaintance of hers who lived in the same apartment building began to appear daily in the lobby, dressed oddly and with makeup not quite on the mark. My mother shunned her and told me, “Her nephews should put her away someplace!”
It was painful to see my mother practicing the very exclusion she herself was on the brink of becoming vulnerable to.
What makes us turn our backs on people with dementia? We recognize with shame what we ourselves might become and turn away to avoid identifying with them.
The more distance we put between us and “them,” the easier it is to say, “That won’t be me,” and to effectively reduce the dementia sufferer to a nonperson.
Through the ages, philosophers have debated who deserves to be considered a person.
One school argues you have to be able to take responsibility for your own actions and choices. Clearly, by that measure, all people with dementia will eventually fail the test.
Another school defines “persons” as those who have a sense of their own identity through time—who can connect their past with their present. That also rules out many with dementia because it requires more memory than most retain. A man with Alzheimer’s may remember the young woman he married 50 years ago but have trouble linking her to the woman who is caring for him now.
The late Tom Kitwood, PhD, a pioneer in rethinking dementia care, used the term, “personhood,” but with a significant difference. For Kitwood, it had nothing to do with cognitive ability. Rather, a person becomes a person when he is engaged as a valued human being in relationship with other people.
Neuropsychologist Steven R. Sabat, PhD, author of The Experience of Alzheimer’s Disease: Life Through a Tangled Veil, (2001) explains that the remaining strengths of people with dementia are such that they only appear in social interactions with others. Those living with dementia can be helpful when given a chance to help; sensitive to others when in a group; give and receive affection and reach out to interact with others. But none of this can happen if they are socially isolated.
Pointedly, it is up to us, the well, to bring forth their enduring humanity.
Up through the 1980s, typical care of people with dementia didn’t recognize their need for social and relational connection. Many sufferers from Alzheimer’s and other dementias ended up in bed, immobile and withdrawn, like the person Robert Terry described as no longer human.
Today, in good nursing and assisted living homes it is rare to see bedbound dementia sufferers. But there are still institutions where that is the norm.
Of course, “not bedbound” is no guarantee of being treated with respect as a valued, unique human being. Progress toward respectful and humane care is definitely happening, but sometimes I’m made aware of the cultural attitudes that are still holding us back.
Recently, in his column about ethics in the New York Times, New York University philosophy professor Kwame Anthony Appiah, PhD—supplied only with the fact that a man with early onset Alzheimer’s had recently been placed in assisted living—drew the following conclusions:
- That the man no longer recognized his wife
- That he had effectively left the relationship and was now emotionally unavailable to his wife
- That his wife’s status was ethically equivalent to that of a widow.
None of those conditions can be automatically deduced from the mere fact that the man was put in formal care. People enter assisted or nursing care at quite different stages of their disease, depending on a multitude of factors. The one common reason is that the primary caregiver needs help with the person’s care.
Most people with the disease are eager for relationships and even in later stages have some recognition of family members.
In the memory unit of the nursing home where my mother lived her last years, I knew a woman named Marta, who had lost the ability to use words. But she didn’t seem to take much note of that herself. In her wheelchair, she would roll up to anyone who seemed receptive and speak, repeating two syllables, “li di,” rapidly and with great expression. Sometimes she would smile and laugh, and one knew she was saying something funny. At other times, she would look worried, scowl and in a grave tone narrate what was obviously a sober tale.
Relating—both in the sense of telling a story and interacting with another person—seemed to be Marta’s joy. She was a delight, and it was easy to engage with her by matching her mood, mirroring back what she seemed to be feeling.
Depictions like Appiah’s, in which someone with Alzheimer’s is essentially no longer there, and Terry’s, in which they are no longer human, shape how we see dementia and, consequently, how we value and treat those who live with it. The ensuing isolation of people whose greatest need is to belong and have someone be present with them is tragic and significantly adds to the negative effects of the disease.
Furthermore, cultural messages that suggest that people living with dementia don’t matter devalue implicitly the work of countless people giving care. That increases the burdens of all caregivers.
When my mother was in a later stage of the disease but still living at home with me, she was often adrift and angry unless I was giving her my undivided attention. It was 1989, and I had nowhere to turn for advice.
I got through by distancing myself, thinking, “This isn’t my mother. It’s the disease.” I now understand her anxiety and anger much better, and I recognize, most painfully, all the ways I wasn’t meeting her needs.
Rather than distancing ourselves we must come closer and engage, not only for the sake of the afflicted, but for our own sakes as well. In bringing forth their humanity, we fulfill our own.
Today, when a wife says to me, “He’s not the same person. The man I married is no longer there,” I try to explore with her some of the ways he is the same, so that she can recognize the lonely, frightened, vulnerable human being, trying desperately to cope with this cruel disease.
Maggie Sullivan has come to know Alzheimer’s intimately. She was caregiver and advocate during the eight years her mother lived with the disease. For the past 30 years, she has facilitated caregiver support groups for the Alzheimer’s Association, learning from the experience of more than 300 members of those groups. The opinions she expresses here are her own. Maggie is also a writer whose essays and articles have appeared in the New York Times and elsewhere.