My late father-in-law was a born salesman as well as an inveterate storyteller, regaling anyone within earshot with tales of his WWII exploits within the Pacific. He’d hold court at family gatherings, describing at length some shipboard incident he’d described dozens of times before as we all waited to have an opportunity to politely change the subject. Once the stories dried up, we gradually started to realize his memory was failing him. His descent into Alzheimer’s in his 70s left us all scratching our heads; we were completely unprepared to deal with his transformation from a colorful raconteur to a forgetful patriarch to a gibberish-spewing toddler.
I recall sitting with him on our porch one summer afternoon, doing my best to interpret the collection of disjointed syllables that, to him, might have described some wartime fracas inside a Manila bar. I could only run a feeble smile in response.
We’ve advanced significantly in our understanding of dementia in the 17 years since that sailor left us. It remains a devastating disease and a nightmare for family members who're charged with caring for its victims, but amid the gloom there's arisen a nascent movement that aims to shift our perspective. Alzheimer’s doesn’t have to be a “tragedy narrative,” Bill Thomas along with other visionary geriatricians contend. It can really be a gift.
“The main framework America has available to contend with this is . . . that’s it’s a dreadful, destructive ride all the way down and then you die,” Thomas tells Tara Bahrampour within the Washington Post. “While factually true, that's extremely unhelpful to families and elders.”
Much from the suffering Alzheimer’s patients experience comes from the responses of others following the diagnosis, notes Jennifer Carson, director from the Dementia Engagement, Education, and Research program in the University of Nevada at Reno. “Tell someone they have dementia and then ignore them: That’s the suffering, far more than the tragedies that are intrinsic to dementia itself.”
Bahrampour describes the job of several organizations designed to improve dementia sufferers’ cognitive symptoms and quality of life through “humor, empathy, and improvisation.” There’s Thomas’s ChangingAging group that explores the emotional side from the disease with its Disrupt Dementia program, for example, and a Seattle collective called Momentia that organizes outings and facilitates gibberish conversations between caregivers and those with Alzheimer’s.
The effects, Bahrampour reports, can be transformative. She cites a 2021 Canadian study that showed significant cognitive and life-quality improvement among dementia sufferers in a nursing home after a 12-week series of visits from “elder-clowns.”
Mary Fridley runs a workshop at New York City’s East Side Institute called The Joy of Dementia (You’ve Got to Be Kidding) that embraces a light-hearted method of coping with what Fridley admits is an “enormously painful” disease. But she has found that it can also be an immensely freeing experience. “I truly believe it is an opportunity, if people so choose, to be improvisational, to be silly, to play, to free ourselves from the constraints of truth and knowing and assumptions,” she says.
The key for caregivers, explains Karen Stobbe, creator of In the Moment, a Maryland-based dementia-care training organization, would be to simply meet Alzheimer’s victims where they are and follow their cues. Somewhat, it’s similar to dealing with toddlers who can’t clearly articulate their wishes and have a different view of what constitutes acceptable behavior. “We have this tendency where we want that person to be back in our world,” Stobbe says. “We think it’s not normal therefore we want them to stop. If someone’s sitting while dining ripping up napkins and they’re getting joy from it, why not let them do it? Just because it’s not our concept of normal?”
For those journeying through the terrifying wilderness that is Alzheimer’s, just understanding that someone hears them and connects together can be a comfort. “Laugh or sing together,” she says, “and they see it’s OK.”
I wonder now, many years later, what that old sailor considered my unwillingness to connect with him that afternoon on the porch. Maybe he was content to simply spin another yarn for a captive audience, but I can’t help but think he might have appreciated it if I’d asked him to elaborate a bit.