When Jim Mangi’s wife, Kathleen Mangi, was diagnosed with Alzheimer's disease about 15 years ago, Jim Mangi says the couple "got no help from the medical community."
The Saline resident is quick to add that he isn’t "pointing fingers at anybody local here." The Mangis lived in Virginia when Kathleen Mangi was diagnosed. But, Jim Mangi says, "I think the medical community can and should do a better job of helping us caregivers get educated. In my case, they didn't."
As a result, Jim Mangi set about educating himself on the course on Alzheimer's, which is the most common of the many cognition-altering diseases known as dementias, and how to best care for his wife.
"I just dug into this newfangled thing called the internet," he says. "Frankly, I found a lot of garbage out there, a lot of crappy information, all sorts of mystical mumbo jumbo, and quasi-medical profound-sounding stuff, most of which had a considerable price tag."
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Dementia Friendly Saline founder Jim Mangi at a screening of "Singin' in the Rain" at Emagine Saline.
Eventually, Jim Mangi did find some reliable sources of information in the National Institutes of Health and the Alzheimer’s Association. But that initial struggle is part of what prompted him to launch the grassroots organization
Dementia Friendly Saline, making Saline part of a nationwide network of communities actively seeking to support those living with dementia as well as their caregivers.
"The first few years of the dementia journey as a clueless caregiver were really rough for me, and therefore for [my wife]," Jim Mangi says. "So I looked back and said, ‘What can I do to see if I can help some other folks who are now earlier in the journey than I am?’"
Jim Mangi currently serves as Dementia Friendly Saline's chair. He describes the organization as "a small nonprofit whose mission is to make it easier for folks living with dementia to enjoy the community with less difficulty and more dignity."
In pursuit of that goal, the organization works along two axes. On the first, Jim Mangi says he and his cohort work with community leaders in health care, government, and business to "educate them about the kinds of difficulties that people living with dementia encounter when they're out in the community," and to strategize ways to alleviate some of those difficulties.
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Dementia Friendly Saline's screening of "Singin' in the Rain" at Emagine Saline.
At the same time, he says, Dementia Friendly Saline volunteers "work directly with persons living with dementia and their caregivers and friends to see if [volunteers] can't enrich their lives by helping them enjoy activities in the community."
Currently, Dementia Friendly Saline offers the recurring Memory Café event series, which is regularly hosted by Holy Faith Church in Saline. Memory Café events are also held in Ann Arbor and Chelsea.
Memory Cafés typically feature some form of entertainment, such as live music, a magician, or flower arranging, which is tailored to be accessible to visitors with dementia. Participants are encouraged to sing along, participate in discussion, or otherwise engage with the entertainment. It’s a chance to socialize, both for those living with dementia and their caregivers, but it’s also a chance to get information and resources into the hands of those who need it.
"Aside from letting people have a good time and connect and meet new friends, the subtext, if you will, is that we want the caregiver to get some information and to get some education in the process," Jim Mangi says. "There's always a table full of free literature about dementia and about caregiving ... [from] good evidence-based sources."
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Dementia Friendly Saline's screening of "Singin' in the Rain" at Emagine Saline.
One Memory Café visitor, Ilene*, describes the Memory Cafés as "two hours of uninterrupted joy."
"There is humor, there is laughter, there is sharing," she says.
When Ilene’s husband, Carl*, was diagnosed with dementia, she became his primary caregiver. She says the Memory Café events made her realize "there is an entire community that is available for support."
"It's hard for some caregivers to ask for help," she acknowledges. But "the help is out there. It is wonderful. It is supportive."
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Jim Mangi (center) with volunteers at a dementia-friendly screening of "Singin' in the Rain" at Emagine Saline.
Memory Café events are offered in dementia-friendly communities throughout the United States. But Jim Mangi’s innovation was to start adding movies to Dementia Friendly Saline's roster of events. He says he's found "absolutely phenomenal partners" in the local movie theater chain Emagine, which has begun screening a dementia-friendly movie every month at its Saline location.
For these events, Jim Mangi likes to screen classic musicals, like "Singin’ in the Rain," that his guests are likely to have seen before. To prevent disorientation among attendees, lights are kept on during the movie.
"So if you want to talk back to the characters, if you want to sing along with them, if you want to clap, if you want to tap your feet, if you want to get up and dance, we just want you to get up and dance and have a good time," Jim Mangi says.
Ilene has attended the movies with her husband and says they "give ‘escape to the movies’ a whole new, greatly appreciated meaning."
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Dementia Friendly Saline's screening of "Singin' in the Rain" at Emagine Saline.
Like the Memory Cafés, the movies offer a rare chance for those living with dementia, and their caregivers, to socialize. Jim Mangi makes sure to provide a table with informative brochures and pamphlets alongside a table of snacks. But the movies provide another added benefit: they take place in public.
That’s a crucial distinction for a population that is frequently ignored and stigmatized. "Dementia is not something that requires people to stay home and hide," Jim Mangi says. "We want the whole community to see that people living with dementia are a part of our community, not apart from it."
Over email, Jim Mangi added that dementia "should not have the stigma too often associated with it. We don't fully understand these diseases ... but we are quite sure they are not about bad choices, but rather about bad proteins."
Dementia, he concluded, is a disease—not a disgrace.
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Dementia Friendly Saline founder Jim Mangi and Emagine Director of Business Development Nick Thomas.
Although her father had Alzheimer’s, Ilene emphasizes that she and her husband "never anticipated something like this [diagnosis]: how deeply it would affect everything about our lives, our retirement years, our goals, our plans, our dreams, our travel — everything ... about our daily existence."
Ilene says the "best thing" about the Dementia Friendly events for her and Carl is the change in routine. That gentle disruption, she says, "triggers all these wonderful memories—things in [Carl’s] past which are very well anchored."
Jim Mangi says Ilene and Carl are certainly not the only ones to report a positive experience with Dementia Friendly Saline's programming.
"Oh my goodness," he says. "We've gotten some really nice comments from folks. One wife said that her husband felt visible again. Another adult daughter said that she felt so good seeing her mom feel that she belonged somewhere again."
Want to learn more about Dementia Friendly Saline and dementia activism in Michigan? Stay tuned next month for the new season of the Michigan's State of Health podcast from our sister publication Second Wave Michigan, which will focus on how Michigan leaders and activists are working to reframe the conversation on dementia.
*Names changed at their request to protect their privacy.
Natalia Holtzman is a freelance writer based in Ann Arbor. Her work has appeared in publications such as the Minneapolis Star Tribune, the Los Angeles Review of Books, Literary Hub, The Millions, and others.
All photos by Doug Coombe.