“Tho’ much is taken, much abides”: A Good Life within Dementia

Abstract

In writing these essays, we were asked to consider, “What makes a good life in late life?” I thought instantly, perhaps like many people, of photos and stories of older people taking up new careers and new hobbies—running marathons and soup kitchens, starting organic farms. This response is right and proper. Older people can leverage wisdom and creativity to make wonderful contributions to their communities and should be celebrated for doing so. But this happy picture is incomplete. We live longer than ever before, and with that long life, many of us can expect disability. This is the product of medical success. We are less likely to die from cancer, a heart attack, or a stroke; we survive with chronic illnesses and their associated disabilities. A good life in late life, for many of us, will be a life with disability. For this essay, I focus on dementia, a common and ultimately fatal illness, and one that typically lasts many years from the start of symptoms to the end. More than five million Americans currently suffer from dementia; fifteen million paid and volunteer caregivers help support them. What would a good life with dementia look like? How would it change from the early phase, when cognitive impairment and other challenges are relatively modest, to the final phase marked by severe cognitive and physical decline?