{"id":6744,"date":"2021-10-22T07:22:18","date_gmt":"2021-10-22T11:22:18","guid":{"rendered":"https:\/\/www.silvercentury.org\/?p=6744"},"modified":"2021-10-22T07:22:43","modified_gmt":"2021-10-22T11:22:43","slug":"dont-turn-your-back","status":"publish","type":"post","link":"http:\/\/78.142.243.82\/~silvercentury\/2021\/10\/dont-turn-your-back\/","title":{"rendered":"Don\u2019t Turn Your Back"},"content":{"rendered":"

As recently as 1982, the late Robert Terry, MD, a groundbreaking neuropathologist working specifically on Alzheimer\u2019s disease, was quoted in the <\/span>Washington Post,<\/span><\/i> saying:                             <\/span><\/p>\n

All diseases are depersonalizing to some extent. But you\u2019re still human\u2026But a person with a serious dementia is no longer human. He\u2019s a vegetable. That\u2019s devastating. Fearsome. Terrifying to anyone who\u2019s ever seen it\u2014the thought that that could happen to you.<\/span><\/p><\/blockquote>\n

Although Terry knew Alzheimer\u2019s 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\u2019s spread, augmented by appeals to fund Alzheimer\u2019s research that played up the tragedies of memory loss and failure to recognize family members.<\/span><\/p>\n

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\u2019s.<\/span><\/p>\n

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, \u201cHer nephews should put her away someplace!\u201d<\/span><\/p>\n

It was painful to see my mother practicing the very exclusion she herself was on the brink of becoming vulnerable to.<\/span><\/p>\n

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.<\/span><\/p>\n

The more distance we put between us and \u201cthem,\u201d the easier it is to say, \u201cThat won\u2019t be me,\u201d and to effectively reduce the dementia sufferer to a nonperson.<\/span><\/p>\n

Through the ages, philosophers have debated who deserves to be considered a person.<\/span><\/p>\n

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.<\/span><\/p>\n

Another school defines \u201cpersons\u201d as those who have a sense of their own identity through time\u2014who 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\u2019s may remember the young woman he married 50 years ago but have trouble linking her to the woman who is caring for him now.<\/span><\/p>\n

The late Tom Kitwood, PhD, a pioneer in rethinking dementia care, used the term, \u201cpersonhood,\u201d 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.<\/span><\/p>\n

Neuropsychologist Steven R. Sabat, PhD, author of <\/span>The Experience of Alzheimer\u2019s Disease: Life Through a Tangled Veil,<\/span><\/i> (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. <\/span><\/p>\n

Pointedly, it is up to us, the well, to bring forth their enduring humanity.<\/span><\/p>\n

Up through the 1980s, typical care of people with dementia didn\u2019t recognize their need for social and relational connection. Many sufferers from Alzheimer\u2019s and other dementias ended up in bed, immobile and withdrawn, like the person Robert Terry described as no longer human.<\/span><\/p>\n

Today, in <\/span>good<\/span><\/i> nursing and assisted living homes it is rare to see bedbound dementia sufferers. But there are still institutions where that is the norm.<\/span><\/p>\n

Of course, \u201cnot bedbound\u201d 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\u2019m made aware of the cultural attitudes that are still holding us back. <\/span><\/p>\n

Recently, in his column about ethics in the <\/span>New York Times<\/span><\/i>, New York University philosophy professor Kwame Anthony Appiah, PhD\u2014supplied only with the fact that a man with early onset Alzheimer\u2019s had recently been placed in assisted living\u2014drew the following conclusions:<\/span><\/p>\n