Milwaukee is trying to become more dementia-friendly, allowing the aging to live at home longer.
The hallway winds through an ordinary office. It takes Tom Hlavacek past a well-stocked resource library, a small alcove that hosts a 24-7 hotline, and a classroom crowded with people who’ll later leave with certificates in hand.
This is the Alzheimer’s Association’s Southeast Wisconsin Chapter headquarters, tucked into a building just east of State Fair Park, and it’s all open to the public, gratis. One of its mandates is education – for professional caregivers, patients and families, even just kids who need to learn about “what’s happening to grandpa,” explains Hlavacek, the chapter’s executive director. In many ways, it’s the epicenter of Milwaukee’s attempts to come to grips with dementia.
But people with dementia don’t live in offices. They live in communities, and there is a growing movement to not only keep them at home as long as possible, but to also make them more comfortable while staying there.
It’s a push for “dementia-capable” and “dementia-friendly” communities, with broad-based goals ranging from proper systemic care to reducing dementia’s stigma to making businesses and public spaces more accessible for those who have dementia. “It’s really an effort to try to get communities to be more responsive, open and welcoming,” Hlavacek says, “working through already-existing organizations – churches, schools, neighborhood centers and coffee shops.”
A handful of U.S. cities have embarked on such initiatives, including some in Wisconsin. But it’s one thing for Watertown, population 24,000, to coordinate dementia-friendly endeavors. It’s quite different to do so in Milwaukee, population 600,000, where an estimated 17,000 people have Alzheimer’s now. By 2035, if prevalence rates remain steady, that will grow by 68 percent. Nationwide, by 2050, it’s expected that 13.5 million Americans will have Alzheimer’s. “Nobody’s ready for those numbers,” Hlavacek says.
They’re working toward improving that readiness. The Alzheimer’s Association is developing a dementia-friendly toolkit detailing best-practice approaches to be used throughout Wisconsin. AARP is assisting by making its distribution network available. The state’s Department of Health Services is in the midst of redesigning its dementia care system. The Milwaukee County Department of Family Care recently hired a dementia care specialist to coordinate its efforts.
Grassroots endeavors are becoming more common, too. Dementia patients and their caregivers are gathering at “memory cafes,” be it in backyards or coffee shops. “There’s no stress and you can talk freely,” says Harlan Mueller, whose wife of 47 years, Gail, was diagnosed with early-stage Alzheimer’s some two years ago. “They understand each other. If they can’t think of a word, the other person is so patient.”
The Alzheimer’s Association helps organize the cafes and other outings, to museums, musicals and the like. New relationships are born to replace ones that have disappeared.
“People describe it as their new families,” Hlavacek says, which takes on an added importance. “Because one of the saddest things about this is how family fades away.”