Janelle Taylor started researching dementia about 10 years ago, after her father died and she and her siblings had to step up to care for their mother, who had been diagnosed with dementia some years before.
Hearing the same question, “Does she recognize you?” over and over sparked Taylor’s interest, she says.
Over time, Taylor realized that the answer didn’t matter, and from that her research into how society deals with people with dementia began.
Because the condition affects memory and language— qualities considered central to identity and relationships—it presents implicit questions. Who are you if you can’t remember your life before? What is your relationship with someone if you can’t remember what you did together?
“In a way, dementia shows us just how much more there is to being a person,” says Taylor, a professor of anthropology at the University of Washington. “Aside from the capacities that dementia takes away, we are who we are because of the network of people who support us and sustain us, and keep our identity in place.”
Taylor’s earlier research focused on how people with dementia were included—or not—in medical studies in the field of geriatrics. Since then, with support from the Fetzer Institute, she has delved into social aspects, such as the use of art as an activity.
Her latest approach is an examination of friendship between those with dementia and those without. Her piece appears in an anthology, Successful Aging as a Contemporary Obsession: Global Perspectives (Rutgers University Press, 2017). Another article based on this research is in the June issue of the journal Culture, Medicine & Psychiatry.
What made you choose to focus on the friends of people with dementia?
When I was trying to do research about what I was seeing in my own experience, I noticed how fragile friendships seemed to become. A lot of people tend to fall away, which is perhaps understandable. Only one friend of my mom’s has remained connected and continues to visit her, so I know it’s not impossible.
But I couldn’t find much that had been written about the impact on friends, in contrast to the large amount of research that’s been done on family caregivers. It just seems to me that there are these broader contexts that deserve attention.
In your piece, you talk about “exemplary friends” and how this situation provides a “moral lab” for friendship. What did you find in your interviews?
I borrowed the term “exemplary” from the Fetzer Institute, which has this way of thinking about research as identifying and describing examples that demonstrate the power of love, compassion, and forgiveness. It’s worth thinking about who we can look to as examples of having found a way to maintain friendships after the onset of dementia.
It would be easy to list all the reasons why it’s hard, but that would seem to me to be less helpful than saying actually, there are people who have found ways to do it and reasons to do it, and there are things we can learn from them.
Sometimes people stay engaged as friends because they have a deep feeling about who they are as a person: Am I the kind of person who would turn away from someone that I’ve loved for decades because they don’t recognize me anymore, or am I going to be the kind of person who stays through thick and thin?
People I have spoken with also found unexpected positive things—being childlike, for example, in ways they wouldn’t have allowed themselves to be before. They felt free to hold hands or sing songs together—the sweet and nice things that grown-ups learn not do.
Life throws different things at us. As an anthropologist, I’m convinced that how we deal with those things tells us something about who we are and how we think about our relationships.
Were people able to describe what they learned from these friends?
People talked about seeing new sides of the person with dementia. For instance, I heard of one man who’d always been very controlled and reserved but had become softer and sweet. Some said they learned how to be creative and find new ways of being together, ways of including the person in groups and outings. Some had learned specific things about interacting with someone with dementia and made it a point to share that knowledge with others—what to do when the friend becomes agitated, for example, or how to keep them engaged even when they don’t take part in an activity. One woman said, “You get such different things back,”—and that in finding new sides of her friend, she had also learned things about herself, the way you often do when you grow from a difficult experience.
What can people who haven’t encountered dementia in their own lives learn from your research?
Social isolation isn’t a necessary consequence of dementia. If people become isolated socially, that’s because the rest of us have turned away from them, and that doesn’t always have to happen. There are ways we can stay connected, and having friends makes life better, whether for someone with dementia or for anyone else. And the people I’ve spoken with have taught me that there’s something of value in being able to say at the end of a life, “Something difficult happened, I stayed with it, and I learned something about myself and others in the process.”
Dementia is coming soon to a life near you. As we all live longer and have the opportunity to develop dementia ourselves or see it happen in others, how are we going to live with it? Even though there’s nothing medically that can prevent or cure the condition, there is a lot we can do to make life better for people with dementia.
Source: University of Washington