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How to make the lives of those with dementia joyful

Dimentia Reimagined
Dimentia Reimagined

Psychiatrist and bioethicist Tia Powell, MD ’87, has already written her dementia playlist just in case. The list comprises 16 songs she loves, beginning with “Let’s Groove” by Earth, Wind & Fire, and wrapping up with Otis Redding’s version of “Try a Little Tenderness” and the Billie Holiday rendition of “I’ll Be Seeing You.”

Those tunes could come in handy if Powell develops dementia, as even people who can no longer speak often still enjoy music. “This playlist helps me create a positive image of living with dementia,” said Powell, who directs the Montefiore Einstein Center for Bioethics and holds the Shoshanah Trachtenberg Frackman Chair in Bioethics at Albert Einstein College of Medicine.

In Dementia Reimagined: Building a Life of Joy and Dignity from Beginning to End, Powell explores how technology, intergenerational symbiosis, and shifts in values can make the lives of those affected not only more tolerable but even joyful. Powell reminds readers that the burden of Alzheimer’s and other forms of dementia will only worsen as she and her fellow baby boomers grow older. Dementia affects roughly four out of 10 people who reach age 85. However, she writes, “This illness is not just about loss; it is also about preservation—of affection, of dignity, of hope.”

Powell fears that no pill will arrive to save her generation; present experimental drugs for Alzheimer’s, for instance, have a 99.6% failure rate. “Science plays the long game,” she said. And so while scientists work toward a cure, Powell recommends that we also invest in care. “If we focused more on the reality of care and less on the fantasy of eradication, we might deal with these pressing issues.”

For physicians, this approach will require a cultural shift. Medicine “sees itself as manly, offering heroic cures,” Powell wrote. “But a great deal of what medicine offers patients is care—incremental, accommodating, feminine (if you stick with the outmoded metaphor). Yet medicine is embarrassed to admit this. Care seems soft and unscientific; we’d prefer to hand out [a] swashbuckling cure.”

She said physicians can improve care by looking beyond the immediate effects of a potential treatment or test. For instance, perhaps the $2,500 for a PET scan would be better spent helping a patient arrange help with meals (nutrition) or avoid isolation by joining a singing group (possibly improving mood and mental status). To add this layer of care, medical practices could employ a social worker or treatment coordinator. “The benefit of being part of Big Medicine is you may be able to access resources that a single doc in a lone office is not able to,” Powell said.

Powell manages to remain upbeat, peppering her book with witticisms while also addressing the challenges of dementia, from the huge expense (“heading like a meteor toward the children of the baby-boom generation”) to the nitty-gritty: adults in diapers, older individuals lost after wandering away from caregivers. She rejects the claim that the costs of dementia care will spark an intergenerational war. Older and younger individuals can benefit from working together. In some places in Europe, for example, young artists and musicians get free or reduced housing in return for helping older people who live alongside them.

Powell believes that our society overvalues intelligence. “I love to think I’m smart, but I’m not sure that snobbery is one of my best features. There has been some very interesting thinking by people in the disability rights movement about what defines a person, and to what sort of person we owe respect and consideration.

“I find it very upsetting when people talk about having dementia as being a loss of dignity,” she said. Drooling and incontinence are “adorable in babies, and accepted as a natural part of the developmental arc.” In older people, “that’s just the body breaking down, not a moral failure. It’s an arc, and it goes back down again.”