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South Bend center aims to make dementia care more inclusive, in a 'normal environment'

South Bend Tribune - 1/5/2020

Jan. 5--SOUTH BEND -- The idea, announced this summer, seemed a bold turn for the nonprofit Milton Adult Day Services -- to move and totally remake its day center for people with dementia and other impairments to feel more like a home and village where they can shop, have a bite, get their hair done or laze by a creek.

It still aims to "decrease the negative stigma of a dementia diagnosis," said Angel Baginske, director of Alzheimer's and Dementia Services of Northern Indiana.

But organizers are now tweaking their redesign after seeing that it falls short in one area: It wouldn't be socially inclusive enough. Clients would be too segregated from caregivers and the public.

That came to light in November as local organizers met with consultants from the Netherlands who'd inspired this makeover, who'd pioneered a residential village that has gained attention around the world.

"We are working on the emancipation of people with dementia, because they are human beings," Eloy van Hal, senior adviser and a founder of The Hogeweyk, told the group gathered in Mishawaka at the Center for Hospice Care, which runs the Milton center.

The Hogeweyk, in a small town near Amsterdam, cares for 169 people with advanced dementia who each live in homes of five to seven residents that all face into an expansive, outdoor courtyard where they can spend the day by a fountain or garden, watch films in a theater or shop in actual stores. Even with 40% in wheelchairs, van Hal said they can take part in 30 different activities, including some, like swimming, where they go into town. They can dine at a restaurant that's open to the public.

The Dutch village -- which is a licensed nursing home, though completely reimagined -- has inspired about 50 initiatives around the world, van Hal said. Some use a few of The Hogeweyk's concepts, and a few use all of them.

But more than 20 years after first experimenting with the idea, he said, if Hogeweyk's founders were to build a new village, they'd make it more open to the community -- so that residents and the public interact more -- while weighing questions about residents' wandering and safety.

On a typical day in South Bend, about 25 people come to the Milton center, now at 922 E. Colfax Ave., to do arts, crafts, singing and socializing in two large activity rooms and a wood shop. Unlike Hogeweyk, it isn't residential. Clients come for mental stimulation and to give their caregivers a break, then return to their own homes.

The newly renamed Care Connections Center at Milton Village would move to a new site. It's expected to open late in 2020 after renovations finish in the former Hospice House on Indiana 933 just south of the Indiana Toll Road. The possibly $3.2 million project, financed by private grants, would create a living room and kitchenette but also a space that mimics an old-time South Bend downtown. There would be a beauty salon, chapel, pub, library, theater, storefronts and ice cream shop, plus a gardened outdoor space by Juday Creek.

Caregivers, who are often family members, would also find rooms for quiet, exercise, counseling, classes and meetings, but these would be separate -- and that's where van Hal had an issue.

Local organizers are now tweaking their designs so that caregivers and clients use more shared spaces, not separated, though van Hal acknowledged that there are moments when both of them need privacy. Baginske said local officials are still finalizing the changes.

Among the suggestions, van Hal said, was creating a sort of Alzheimer's cafe or letting other groups use spaces in the center, like schools.

More welcome

If community is important, it begs a personal question: How do you keep friends engaged in the person's life?

"Someone with dementia, who has forgotten who you are, still knows the sound of your voice and the touch of your hand," said Paula Abraham, a Milton board member whose mother died in 2016 after living with Alzheimer's disease. "You don't have to be afraid of them."

People often ask her: What do I say? What do I do? She advises: Hold the person's hand, read a book, go for a walk or watch a show with the person.

She is among four people trained to give presentations in a newly formed chapter of Dementia Friends Indiana, a group that educates the public so people with dementia will be accepted and understood in the community.

The group plans to start with local fire departments but hopes to reach out to banks, grocery stores and churches.

The fire departments in Carmel and Noblesville, both in central Indiana, became the first in the state to require Dementia Friends training for emergency responders, helping them to identify someone who may have dementia. They're learning how body language, eye contact and tone of voice can help to calm and communicate with someone with dementia, who can become agitated or combative in crisis, according to Dementia Friends Indiana.

Abraham recalls a visit to a hospital with her late mother when the emergency room staff wouldn't let Abraham follow her mom and help to communicate. Abraham, too, was diagnosed with early onset Alzheimer's but later stopped her memory lapses after a change in an unrelated medication. Drugs and nutrient imbalances can mimic the symptoms of dementia.

More normal life

The Milton village would be the first nonresidential "day center" that's officially modeled after Hogeweyk. Van Hal said Hogeweyk's main concept isn't about the bricks and mortar but has a lot to do with supporting a person's own preferences.

"You make your own decisions," he said. "Choice is very important."

That can be a challenge since people with dementia often have a hard time knowing or deciding what they want to do. Van Hal said staff try to "motivate or stimulate" residents to participate but not to "take over" for them. But he said it's first critical for Hogeweyk to understand each person's lifestyle and preferences -- so residents continue to do things they're used to doing. Having a more "normal environment," he said, makes that easier.

"We must figure out what that person really wants or not wants to do," he said.

Some people want to spend part of the day alone. Small activities can be important, he said, like having residents help to set the table or do the dishes. They often fix their own sandwiches.

Homes are themed according to residents' tastes. Traditional homes have plastic tablecloths. Formal homes have linen cloth. The menu in each house also caters to the residents, be it more traditional cuisine or modern.

Van Hal notes that the village isn't a cure. Residents still deal with the anxieties that come with dementia, though the use of medications for it is much less.

Showing a photo of a resident peeling potatoes for a meal, he said, "By doing this very Dutch thing, peeling potatoes, they feel alive."

jdits@sbtinfo.com

574-235-6158

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