I have lived in an intentional community, a “cohousing” community, with my husband and children for 16 years. Our homes are built quite close together, we share outdoor space and “common houses” with meeting rooms, laundry facilities, dining areas, and play rooms, and many residents join village meals several times a week.
Such an intentional community serves as a kind of laboratory for aging not “in place” but “in community.” As cohousing spreads across the world, it has the potential to teach us a lot about one of the growing challenges—or opportunities—of aging: how to maintain friendships with people we care about who develop Alzheimer’s disease or another dementia.
With one in 8 people over age 65 developing dementia, and nearly 50 percent over age 85, each of us is likely to have a friend with dementia, be a care partner for a person with dementia, or develop it ourselves. Aging “in community,” whether we live in an intentional community or a suburb, means that we will have to choose how we respond when our friends start to develop dementia. Will we grow closer, or slip away?
A recent book, Aging Together: Dementia, Friendship and Flourishing Communities by Susan H. and John T. McFadden (Johns Hopkins University Press, now out in paperback), is an excellent guide for anyone who cares about a friend with dementia. It’s addressed “primarily to persons who have not given much thought to what will happen to their own friendships when forgetfulness increases.” The key question, the authors suggest, is “How do you continue a friendship when your friend no longer remembers the story of your friendship?”
Susan is a professor of psychology at the University of Wisconsin, Oshkosh, and writes extensively on aging, religion and spirituality. John, a minister for over 30 years, has served as a pastoral presence to people with advanced dementia. As Susan says in a video of a talk they gave together, “Regardless of whether you or a loved one have a diagnosis of dementia, we are all living with dementia. We need to tell a new story about dementia—a story that is not defined by fear and exclusion.”
In the video, John says “We can, together, weave a new story—a story about continuing friendships, rather than withdrawing from friendship. It’s a story about building dementia-friendly communities where our neighbors with dementia, and their care partners, are still very much a part of the give and take and flow and life together in community….[You can tell your friend,] ‘You’re going on a difficult journey, but you don’t have to do it alone. I, your friend, will travel it with you; I will not abandon you.’ ”
As John says, “We treat [dementia] too often in this country as a personal tragedy, of interest only to the person, his or her immediate family, and their medical providers. Their friends—former friends—come up with these horrible excuses—‘Oh, I don’t go to see Jim anymore because he’s just an ‘empty shell’ of the man he was.’ Or ‘I want to remember him the way he was.’ It’s a cop-out. It’s abandoning the responsibility of friendship, often because we feel awkward; we don’t know how to continue it.”
I have seen this played out in cohousing. Some of our neighbors have developed dementia over the years, and I’ve watched the community rally to include the persons with dementia and to spend time with them, and I’ve seen the community—and myself—fall short. Many of us struggle with feelings of discomfort and fear, as well as confusion about how to communicate with a person living with the middle or advanced stages of dementia. (Note that the confusion is ours, not theirs.)
My own mother lived with dementia, so I was no stranger to my own fear, discomfort and confusion—at least in my early years of being her care partner. Mom had vascular dementia and probable Alzheimer’s disease, and lived with me briefly in our cohousing community before moving to assisted living. When she lived with us I tried to help her build friendships and to include her in our community. When she lived in dementia care facilities I continued to try to help her develop new friendships and maintain some of her old ones. Over time, I learned from dementia care experts such as Joanne Koenig Coste, Dr. Al Power and Dr. Bill Thomas, that Mom was still “in there,” still capable of learning, growing, sharing affection, and even forming new friendships. Being her care partner was a healing experience for me, allowing me to grow closer to her and overcome our challenging history as mother and daughter—to become her friend.
So I was eager to read Aging Together: Dementia, Friendship and Flourishing Communities. I first read the book last year, when it was available only as a hardcover. (At that time I felt I couldn’t recommend it to care partners, as it was quite expensive). Now that it’s out in paperback, I feel I can wholeheartedly recommend it. And I’ve just finished reading it a second time.
I approached the book with excitement because we rarely see the words “dementia,” “friendship” and “communities” together. Books on dementia care partnerships are usually addressed not to friends but to family caregivers or professionals in elder care. (One exception is The Best Friends Approach to Alzheimer’s Care by Virginia Bell and David Troxel, which stresses, rightly, that family members can be “friends,” too.) It’s often assumed that living with dementia is a challenge primarily between the person with dementia and their main care partner, that it’s a private story between family members—and a story that many people would rather not think about. In fact, the authors of Aging Together were warned by colleagues not to use the word “dementia” in the subtitle. “No one will want to read your book!” they were told.
The McFaddens are not short on courage. Or insight. I’ve read a lot of books about dementia care, but the authors of Aging Together kept surprising me and making me think. (I put sticky notes on nearly every page.)
Aging Together is not an “easy read,” however. While the book seems to be intended for a general audience, its style leans toward the academic, with some dense passages, many references to research studies, and a generous allotment of in-text citations. And while the prose is lightened by vignettes here and there about real people with dementia and their care partners, I wish there had been more.
This is not a book that you will digest in one or two sittings, but it is well worth your time. Again and again the authors will nudge you to look at friendship in new ways (and old ways—going back to Aristotle) and to reconsider any preconceptions you might have about Alzheimer’s disease and other dementias. Lots of books talk about the “personhood” of people living with dementia, but Aging Together does a fascinating job of summarizing the history of person-centered dementia care, as well as highlighting current authors who’ve written about culture change in dementia care such as Anne Basting (Forget Memory), Dr. Richard Taylor (Alzheimer’s from the Inside Out), and Lauren Kessler (Finding Life in the Land of Alzheimer’s).
Is it possible to stay friends with persons living with advanced dementia? When persons can no longer remember who you are or all the things you’ve done together over the years, when they can no longer hold a conversation, is there any point spending time with them? Do these friends have anything they can give you, or are the relationships no longer “reciprocal”?
The authors of Aging Together will walk you through each of these questions and much more, leaving you hopeful and profoundly moved.
Read more about Aging Together: Dementia, Friendship, and Flourishing Communities here.
Watch a video of the authors speaking about their book here:
Age On: Friendship, Community, and Dementia from Jason A. Smith on Vimeo.
Madelyn Burks says
I think that it is great that this book talks about friendship. Dementia is a very lonely disease. I work in a Dementia care facility that only has residents who suffer from this and we try to get everyone involved as best we can to keep them from getting lonely.
Erin R says
Dementia is such a difficult disease, and no one is ever really sure of how to deal with it. After working in a dementia unit for several years, I still struggled some days. I loved that the book touches on friends and how they can interact with their friends, family, etc. As a nursing major, I will definitely be looking into this book.
Allysen Brown says
I believe that this article really shed a light on how we react to persons living with Dementia. It doesn’t matter how you live, people still do not know how to react to the disease and often fall short of our duties. I love that the book includes friends, because I do not think that anyone has a real answer on how to be a friend to someone that you have known for many years and shared many experiences, but they do not remember you or those experiences. I believe that this book can help anyone looking to answer this question and so many more.
Anti Aging Today (@StopAgingUS) says
Thanks for sharing
Thank you for this excellent review. Another good addition to the emerging AlzLit.