Janet Adkins, a fifty-four-year-old English teacher, decided to make herself gone before the disease got the chance. Diagnosed with early-onset Alzheimer’s disease, she was Dr. Jack Kevorkian’s first client.

A minister friend asked me recently about my grandfather. I told her about his move to the nursing home. Her reflexive response: “Oh, so he’s gone.” Gone.

In the 1980s and 90s, the British social psychologist Tom Kitwood developed a new model for providing care to persons with dementia. Kitwood challenged the old culture of care that viewed dementia patients as problems to be managed, as bodies in need of physical care and little else.

Herein lies the frightening yet 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.

Kitwood understood malignant social psychology as “in the air”—part of our cultural inheritance, not a phenomenon to be blamed on individual caregivers. Malignant responses to dementia, in his 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.

Maria had advanced cancer for much longer than anyone should. She underwent risky major surgeries as palliative measures. Chemo was a steady diet for years. Her will to live was tenacious.

She endured ongoing and extreme treatments—not because she was in denial or paralyzed by fear—but because she wanted to enjoy as much time as she could with her teenage daughter, who had special needs. She wanted to take in the beauty of the earth, and to make art for as long as possible.

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