Disrupting dementia: Doctor aims for a human revolution among caregivers

Oct. 24--SOUTH BEND -- Henry, a 94-year-old man with dementia, slumped over in his chair, barely speaking. It's how his caretakers at the nursing home were used to seeing him. Then a young woman placed headphones on his ears. When the tunes of his younger days started, he lifted his head, widened his eyes and began to hoot and hum along.

Tears welled up in the eyes of both Henry's caretakers and the filmmaker who was recording this sweet moment -- a video clip that would go viral on social media.

The national Music & Memory program, which is now in local nursing facilities, is a taste of the human revolution that physician Bill Thomas wants for dementia. He came to speak to dozens of local nursing care professionals and caregivers Thursday on his "Age of Disruption Tour," bringing wisdom from the movement he'd started -- the Eden Alternative -- to make nursing facilities more humane with things like pets, plants, kids, wine and music.

Stop segregating elders from the rest of us, he implored at the Michiana Gerontology Institute's annual conference. Stop fearing the process of aging, which he described as "a symphony, and it's kind of beautiful."

Instead, he said, bring elders and all ages together in community.

"We have to address ageism as a significant problem in our culture," he said in his warm, theatrical voice. He arrived at The Salvation Army's Kroc Center on a bus tour, the "Age of Disruption," with a small group of musicians who used a stage to relate, on an emotional level, how to face dementia.

Since medications so far cannot cure dementia, he said, "The tool we have is culture."

Stage player Jennifer Carson described a movement in Seattle called Momentia for people with dementia, who chimed in on an improv bit for Youtube: "I'm still able." "I'm not scary." "Having dementia is an adventure, not a disease."

Carson, a researcher of dementia and long-term care at the University of Nevada-Reno, said the way to change dementia care is through: Love. Community. And working out solutions for people with dementia in partnership -- that is "nothing about us, without us."

A panel discussion with local people in nursing care then grappled with how to make that happen here.

"There really is a meaning behind what they're telling us; we have to slow down to listen," Shari Binkley agreed, talking about the sometimes confusing words from people with dementia.

She is director of the Sanctuary at St. Paul's in South Bend, where youth groups often visit and where two South Bend Cubs baseball players lived for the summer. Binkley herself had helped to care for her mother in law before she died from Alzheimer's disease.

JoAnn Burke, who retired after 18 years of teaching social work at Saint Mary's College and starting its gerontology program, said she's never seen her college students get so excited about a project as when they recently took the Music & Memory program to local seniors with dementia in a nursing home. She later found that students were coming back on their own to help with manicures and a prom at the nursing home.

The Community Foundation of St. Joseph County still has money available, Burke said, to bring the program to other facilities.

Music & Memory, for all its simplicity, has proven to be successful nationwide in stirring emotions and joy (aliveinside.org).

As for other activities, don't assume one will work for anyone. Debbie Carriveau, director of the local Institute for Excellence in Memory Care, said her late father, who had dementia, would have balked at Bingo. The man had been a farmer. He could sniff soil and tell what it was missing. If he would have come to a local facility, she said, it would have been better to give him jars of dirt.

Carson said she was involved in a survey of 219 people with dementia, asking them what they needed for wellbeing. They responded that they didn't need activities -- instead, they wanted opportunities for meaningful experiences that they could choose. They'd suggested simply: "seek freedom," "make a difference," "grow and develop" and "just have fun."

"The main thing is, they need that sense of worth," Binkley said.

People with dementia come to Memorial Hospital each week without any connection -- no family, no nursing home -- after a neighbor noticed they weren't picking up their mail, or after they were out wandering, said Michelle Anastasio, clinical social worker in behavioral health.

There is a good core group of professionals to work with them. But there needs to be more, Anastasio said.

Near the end of the conference, staff from a trio of nursing facilities, including the West Woods of Bridgman, were trying to figure out how to take these abstract ideas and make them work in their heavily regulated environment. Among them, physician Dan Hayward said he was struck by a message that runs counter to a pull-the-plug mentality: "Everyone has worth, even when they can't say something."

But too many staff in nursing care learn about these progressive ideas from videos or Internet classes, Carriveau said. They need to physically see it in action, she said, adding, "Nobody ever walks with staff to help them implement it."

That sort of role modeling happens at the institute she directs, which opened almost a year ago at the Alzheimer's & Dementia Services of Northern Indiana to provide live classroom training for nursing care businesses.

Carson is helping facilities with memory care units to "reintegrate" people with the other residents or back to their own homes -- "so that we still meet people's needs where they choose to live."

"How," she asked, "do we create inclusive communities?"

jdits@sbtinfo.com

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