How I’m Preparing for the Dementia I Believe I Will Get

Mild to moderate dementia lasts for years — so why not make them good ones?

Tia Powell, April 12, 2019

Somewhere between a third and a half of Americans will have dementia by the time they reach 85. I assume I’m in the batch that gets it; my mother and grandmother both suffered from the disease. I don’t like it, but I’m determined to find joy no matter the course it takes.

Dementia’s onset is slow; the day of diagnosis is not the day of oblivion. You can choose to see that gradual loss as a glass half empty or half full. The half-empty version is easier to see. Many people view dementia patients as bed-bound, incontinent, drooling. But those extreme limitations come at the end of the disease, not the beginning. Most people with dementia are walking about, joining the family at birthdays and summer picnics. Mild to moderate dementia lasts for years — so it was for my mother and grandmother. During that phase, a person enjoys many of the things she always enjoyed, like the company of family and friends.

Adapting an adage borrowed from hospice, how can we make every remaining day a good day? If there is a way to survive or maybe even thrive with dementia, I’d like to pursue it. And as a psychiatrist and bioethicist — not to mention a caregiver for two family members with dementia — I’ve had a lot of time to think about how to handle it.

At 61, I am starting by choosing to live a healthy life right now, because lifestyle factors may slow down dementia’s arrival. I look for what’s backed by the best available data, and I help myself stay on the path of virtue by finding healthy things I enjoy and am likely to stick with. For me, here’s what that program looks like:

I want a healthy diet, so I stay close to the Mediterranean Diet or one of its variants — these are well-studied and beneficial — and include lots of fresh vegetables and fruit, less meat, some dairy but in moderation. I avoid long shelf-life packaged foods — snacks I could lose in my pantry for a year and still munch some rainy night.

I reject supplements. Some health buffs will disagree, but the FDA recently sent a dozen or so mean letters to supplement manufacturers who claim to prevent or cure dementia; there is no data at all to back up those claims.

People who want to spend money on something to slow cognitive decline should skip the supplements and buy some good walking shoes. Exercise is the single best thing to support healthy cognitive aging. I got a gym membership but found I never used it; I was too shy to be the oldest person there. Despite my native cheapness, I ended up hiring a trainer to do weekly sessions. Now I go every week, and I really feel the difference. I also walk a lot and do yoga, which I should be able to continue to do as I age.

I work on maintaining connections with friends. I overcame my embarrassment and got hearing aids — because hearing loss contributes hugely to social withdrawal and cognitive decline. I don’t claim that any or all of these activities will prevent dementia. But they are good for me now and are my best bet for supporting happiness later, with or without dementia.

When and if my health does decline, I’d like to imagine a dementia that contains joy. The capacity to enjoy and respond to music outlasts many other cognitive functions; even after spontaneous speech has become difficult, many people can still sing lyrics to songs learned long ago. Even in advanced disease, when happiness is hard to come by, people can respond to music they love.

So I’ve borrowed a good idea and made a playlist of some of my favorite songs, to help me picture being happy, even with dementia. I haven’t dressed it up to impress anyone. (As Louis Jordan would say, “Makes no difference what you think about me; makes a whole lotta difference what I think about you.”) This is mostly the music of my youth. I danced with heedless abandon to some of these songs; some call up images of those I love. This is the music with the best chance to wake me, if only for a moment:

  • “Let’s Groove,” Earth, Wind & Fire

  • “Respect,” Aretha Franklin (or “Ain’t No Way”; I’m torn, but we’re going nowhere without Aretha)

  • “Beans and Cornbread,” Louis Jordan

  • “Move On Up,” Curtis Mayfield

  • “Get Down On It,” Kool & the Gang

  • “Let’s Stay Together,” Al Green

  • “I’ll Take You There,” The Staple Singers

  • “St. Thomas,” Sonny Rollins (my husband’s favorite)

  • “For What It’s Worth,” Buffalo Springfield (older child performed this in high school with my husband)

  • “Compared to What,” Ray Charles

  • “Brick House,” The Commodores

  • “Always Be My Baby,” Mariah Carey (both children)

  • “You Can Close Your Eyes,” James Taylor (my younger daughter, her lullaby)

  • “Like a Rolling Stone,” Bob Dylan

  • “Try a Little Tenderness,” Otis Redding Jr.

  • “I’ll Be Seeing You,” Billie Holliday

This playlist helps me create a positive image of living with dementia, which I admit I find hard to do. It will be my gift to myself someday. A small gift, I admit, in the face of a big problem. But what I hope, both for me and for our society, is to shift the view. Dementia is not all horror all the time. I am trying a little tenderness toward my future self.