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A wise woman told me she couldn't imagine what I meant by joy and dignity within dementia. She has seen a loved one die of dementia, and it looked awful. I agree. Dementia today is painful. But it doesn't have to be so bad. I can't guarantee joy and dignity for anyone, including myself, let alone you. I can share my plans for how I hope to find something other than agony in dementia.
I'm going to plan ahead. I'll take some common sense steps, like creating an advance directive, a document that spells out what kind of medical care I do and don't want toward the end, and who should make decisions when I no longer can. I'll share these with my family. Lots of people have these forms, which include proxies and living wills. To make a good advance directive, I will learn as much as possible about what dementia looks like, so my directive will be well informed. I don't want a feeding tube or a ventilator at the end of life, or anything except what brings me comfort.
Advance directives are important, but they only deal with medical care, and that is far from all I need to live well with dementia. I am going to tackle a tough job, which is to change my own mind. I'll start with me and try to make the change I think our society should make. So many people hear "dementia" and think only of the final phase, of a person bed-bound, mute, in pain. If they are lucky they are close to death. We could do so much to make that ending better, but today I want to talk about the 10 years or more of dementia that come before the end.
When we are adolescents, we proudly build new skills and new forms of independence. Dementia is an opposing process, bringing a gradual, irreversible loss of cognitive strengths. It's not just memory. It's also the ability to plan, manage money, speak fluently, even walk. Those are heavy losses, there is just no denying that. But there's another way to look at dementia, a glass-half-full way. I can see you roll your eyes, but try not to. I don't deny that dementia is hard. But it doesn't happen in a day—it takes a decade or more. And during those years there are many strengths that stick around.
Dementia could be less hard if we focus on and support positive attributes that remain. For instance, many retain a love of music. Lots of cities host choruses for those with dementia, often with their partners. Singing brings joy to those with and without dementia. That happily shared activity can make all the difference in a day for someone with dementia and those who care for her. Similarly, many museums and advocacy groups have built great programs that invite those with dementia to look at and enjoy art. These programs bring joy to those with dementia through a variety of avenues, including the experience of beauty, the chance to spark a memory from long ago, and the opportunity to share meaning through images when words no longer come easily. Arts and Minds is one such program, based in NYC, that works with several museums to organize programs for people with dementia and their caregivers. It looks like a blast. If I get dementia, sign me up.
As I try to remodel my own view of dementia, I'll keep searching for things that have the potential to make me happy when I lose skills and capacities. I don't look forward to the day when I can no longer read fiction since I love doing that. But if I get dementia, that day may come. I am better able to think about alternatives now while my mind is at full strength, so I'll get to it. I am planning to return to children's books. Some may find this infantilizing, but not me. A good book is a good book, and I am actually kind of cheerful about an excuse to go back to the books I loved reading to my children. Dr. Seuss is funny, and as they say, he is funny for children of all ages. Ditto Maurice Sendak. When I can't read them myself, I bet I'll love having someone read them to me. Books have always brought me happy feelings, and I am betting the right book will still do that if I start down the path of dementia.
A great article in The Washington Post spoke about a movement to break dementia away from "the narrative of tragedy." I am on board. Dementia is hard—there is nothing easier than finding gloominess there. What takes a bit more creativity, and a shift in the way we all think, is to find some light—maybe just some dappled light, but that's a start.
