Tom Misciagna plays the violin for his wife, Peggy, in their Manassas, Va., home in November. Tom has been learning to play the instrument for the first time, which is one of the ways the couple tries to keep things lighthearted while living with dementia. (Peter Marovich/The Washington Post)
Tom and Peggy Misciagna were sitting in their Manassas, Va., home recently, talking about the children they adopted overseas in the 1980s, when Tom, 64, misremembered a major detail.
“We got two kids out of India,” he said.
Peggy, 59, chimed in. “Philippines.”
“Oh, yeah, Philippines,” said Tom, a retired CIA officer. He grinned wryly at his wife. “That’s Ollie talking.”
Ollie is their nickname for Alzheimer’s, the disease Tom was diagnosed with seven years ago. For the Misciagnas, Ollie is a third presence in the house, one they didn’t invite in. But since he’s there, they’re making room for him. And though it might seem counterintuitive, they are even trying to have fun with him.
That approach – giving the illness a nickname, smoothly zigging after hitting a zag – puts the Misciagnas in a growing camp of people determined to approach dementia care differently, coming at it with a sense of openness, playfulness and even wonder.
Tom and Peggy Maisciagna participate in a Friday morning bowling league. They are living with Alzheimer’s. (Peter Marovich/The Washington Post)
It is in stark contrast to earlier generations of Alzheimer’s patients and their caregivers, who saw the disease as something to be hidden. Even now, fewer than half of Alzheimer’s patients are told they have it, according to a 2015 Alzheimer’s Association report, and a 2012 study found it surpassed cancer as the disease Americans fear most. It has been swathed in shame, stuck in what Bill Thomas, a geriatrician who is working to change attitudes about old age, calls “the tragedy narrative.”
“The main framework America has available to contend with this is . . . that it’s a terrible, destructive ride all the way down and then you die,” he said. “While factually true, that is extremely unhelpful to families and elders.”
Family members often try to nudge a loved one back toward getting facts right or remembering things correctly, but as the disease progresses this can turn their daily interactions into grim, and increasingly frustrating, battles.
Instead, Thomas and others are promoting a more joyful approach, which they say can help caregivers and patients alike. It involves a lot of flexibility and willingness to expand one’s ideas of how things are supposed to be – even, crazy though it might sound, to see Alzheimer’s as a kind of gift.
Too much attention is focused on medicalizing the disease, said Mary Fridley, co-creator of a workshop called “The Joy of Dementia (You’ve Got to Be Kidding!)” at the East Side Institute, an alternative psychology and education research center in New York.
“Dementia is enormously painful,” said Fridley, who has written about caring for her mother, who had Alzheimer’s and died a year ago. But, she added, “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.”
Tom Misciagna and his wife, Peggy, have a nickname, Ollie, for Alzheimer’s, the disease Tom was diagnosed with seven years ago at 57. Ollie is a presence they didn’t invite into their lives, but they’re making room – and having fun – with him. (Peter Marovich/The Washington Post)
A 2016 pilot study in a Canadian nursing home found that dementia patients’ behavioral and psychological symptoms declined significantly and their quality-of-life scores improved significantly after 12 weeks of visits by “elder-clowns” who engaged with them using humor, empathy and improvisation. Caregivers, too, appear to benefit: A 2016 Australian study found dementia-care staff with positive attitudes and “person-centered” strategies felt more competent about their ability to provide care.
Although large-scale studies on positive approaches to dementia have yet to be done, a growing number of groups around the United States are embracing them.
Thomas’s organization, ChangingAging, has a traveling show called “Disrupt Dementia” that explores the emotions associated with dementia. And in Seattle, a collective movement known as Momentia facilitates social gatherings at coffee shops, museum tours, zoo walks, and even gibberish conversations for people with dementia and their caregivers.
That is familiar to Fridley. “With my mom, especially as she began to lose, quote-unquote, her capacity to speak, she was babbling and the words were nonsensical,” she said.
Rather than staying confined to a fixed idea of what language is, Fridley stopped worrying about it.
“Sometimes, we created a poem together. She would say something and I would say something that, quote, rhymed and then she would say something that rhymed, like, ‘I’m dying;’ ‘You’re dying;’ ‘I’m dining;’ ‘I’m dining before I’m dying.’ ”
Jennifer Carson, director of the newly launched Dementia Engagement, Education and Research program at the University of Nevada at Reno, encourages this kind of engagement.
“Alzheimer’s can be a liberating event, an opportunity to fly,” she said. “This is in no way to dismiss the pain and suffering that comes from dementia, but to understand that a lot of that pain and suffering comes from the response.”
Carson believes much suffering comes from the social response after the diagnosis, what she describes as being treated as if you’re no longer there. “Tell someone they have dementia and then ignore them: That’s the suffering, way more than the tragedies that are intrinsic to dementia itself.”
That was the experience of Brian LeBlanc of Pensacola, Fla., who was diagnosed with Alzheimer’s four years ago. People would walk up and “turn to whoever I was with and say, ‘How’s he doing?’ I’d turn to them and say, ‘I’m doing pretty good and I can still hear you,’ ” he said.
LeBlanc, 58, was painfully familiar with the disease – his mother, grandfather and great-grandmother had it, and receiving his diagnosis was devastating. But, he said, “I did not want to stay in that dark place.”
His mother had never wanted to talk about her Alzheimer’s and became withdrawn after her diagnosis. But LeBlanc’s background was in public relations and marketing, so he started doing what he knew best: traveling and speaking publicly, hoping to educate people about how Alzheimer’s feels from the inside.
From the early days of his diagnosis, LeBlanc used humor as a coping mechanism. After he learned he had the disease, a friend sent him a picture of a T-shirt that read:
“Roses are red
Violets are blue
I have Alzheimer’s
Cheese on toast.”
“I thought that was the funniest thing,” he said. “Those are the type of things that keep me going. I get enough of the stigma of people saying I don’t look like I have Alzheimer’s. But it’s the people who are really my friends who will stick with me and joke and say, ‘Hey, do you have the 20 bucks you owe me?’ And then I have to stop and think, and they’ll start laughing.”