Dementia advocate and caregiver Jim Mangi was surprised to see 50 to 60 people show up each week, even in a small city like Saline when he began his “It’s a Disease, Not a Disgrace” talks in 2019.
His goal was to inform people about dementia, a disease including Alzheimer’s, that erodes memory and thinking skills and affects more than 6 million Americans, according to the National Institute on Aging.
But he also hoped to spur the Michigan city to be designated by Dementia Friendly America for its efforts to be dementia-friendly.
The Dementia Friendly movement, begun in 2015, designates municipalities, as well as individuals, that create awareness programs and resources for people with dementia and their caregivers. The campaign’s partner is USAging, which supports the nation’s Area Agencies on Aging. To earn the distinction, a community must demonstrate it has worked to improve services for people with dementia and their caregivers.
Saline and Rochester, Mich., are two of about 350 communities in 43 states to earn the distinction. New York has two dementia-friendly municipal programs in Erie County and New York City. The western New York program is particularly strong, with Erie County as the lead organization for programs and events in eight western NY counties: Allegany, Cattaraugus, Chautauqua, Erie, Genesee, Niagara, Orleans and Wyoming. Programs include managing early stages of dementia, helping with legal issues and finding community resources.
“We help with all their needs moving forward,’’ said Andrea Koch, director of education and training for the Western New York Chapter of the Alzheimer’s Association, which oversees the Erie County-based program, which offers a variety of support groups and social events. “As things change and the disease progresses, we’re here with them every step of the way.’’
In East Buffalo, a predominantly African American support group launched across the street from the Tops Friendly Markets supermarket, where 10 Black people were killed in a May 2022 mass shooting. One of the victims was a dementia caregiver whose family struggled after her death.
The incident “lit a fire under us” to expand programs in more diverse communities, Koch said. A community forum, scheduled before the shooting, brought an outpouring of ideas requesting help with aging issues, including dementia, she said. The meeting led to one successful partnership after another, with libraries, museums, churches and aging groups raising their hands to do more. “We need to show up consistently” at Juneteenth events, community forums and advertising in Black newspapers, she said. The group also hopes to begin or expand programs in Buffalo’s Latino and Bangladeshi communities.
Dementia patient? Come as you are.
Saline, a city of 10,000 on one-time farmland east of Ann Arbor, earned status as a Dementia Friendly city in 2019, the same year Mangi created a small nonprofit, Dementia Friendly Saline, to organize education, business training sessions and welcoming activities for people with dementia and their caregivers.
He shares stories about his own learning curve over the 18 years he has spent as a dementia caregiver for his wife Kathleen Schmidt, who developed early-onset Alzheimer’s disease at 57. Like her husband, she had been an avid photographer and competitive doubles tennis player and an environmental scientist. She is now in the final stage of her disease, unable to talk or feed herself but still able to register her pleasure or unhappiness. “She has forgotten how to talk,” Mangi said. “She has forgotten how to walk. She can no longer scratch her nose. But she hasn’t forgotten how to smile and I celebrate every one of those.”
Mangi found early support for a dementia designation from mayor Brian Marl, a sixth-generation Saline resident who sees the dementia-friendly idea as wise, inexpensive and “very doable.” He doesn’t think branding his city dementia-friendly risks turning off younger people from living there. “I believe you can have a community that attracts and serves young talent while being a place that’s comfortable and hospitable to our older populations,’’ Marl said. “That’s what every great community should strive for — that there are opportunities and services to accommodate a vast array of people from different backgrounds, socioeconomic status, age. That should be the goal of every municipality.”
Dementia-Friendly Saline has three areas of focus: a regular schedule of education and training classes; a popular bimonthly memory cafe; and a partnership with Saline’s Emagine Theatre to hold a monthly Dementia-Friendly Day at the Movies, an idea that has grown to four other metro Detroit Emagine theaters. The events are lively, lights-on experiences, where participants are encouraged to clap, sing and dance to uplifting musicals, comedies and classics like “Mamma Mia,” “Some Like It Hot” and “Field of Dreams.”
The Saline nonprofit also helps build dementia awareness with training sessions like one Mangi conducted recently for the Kiwanis Foundation of Ann Arbor to prepare for a dementia-friendly lunch and shopping event at its Thrift Store. Similarly trained volunteers worked Saline’s recent Spring Festival, offering curbside valet services and escorts to people with dementia and their families; a caregivers panel; and helpers for those needing to find food, shopping and other activities.
But as is the case elsewhere, Saline’s Come as You Are Memory Cafe has emerged as the most popular gathering spot every two weeks for the dementia community. The idea of memory cafes, borrowed from the Netherlands, has grown so much since the late 1990s when it began in the United States, that there’s now a directory and website that lets people find a cafe by ZIP Code.
Saline’s memory cafe at the Holy Faith Church started with just 10 people in 2019 but now as many as 75 people show up every two weeks — as much as the church draws to its Sunday service—“to laugh, have fun and be assured they are not alone in the dementia journey,’’ said the Rev. Andrea Martin, the congregation’s pastor.
It took no more than 10 minutes listening to Motown oldies before many of the 55 in attendance at an April memory cafe took to the dance floor to move and shake to The Silhouettes’ “Get A Job,” then forming a line-dancing train around the room to Gladys Knight’s “Midnight Train to Georgia.”
“Music is so powerful,” said Carol Preston, a volunteer whose husband has dementia. She roams the room with a microphone to encourage singing and participation, telling people they can pet a yellow lab that roams the room. “Just don’t feed him.”
Lori Venable and her husband Tom, who has dementia, have come to the café for two years. “He’s a storyteller and it helps him a lot, especially when there’s music. He’s even facilitated a couple songs we call Tom’s Tunes. He’ll play a song and tell stories about when he first heard the song.”
Mangi hopes to see other cities become dementia friendly. He met recently with the Rotary clubs for Adrian and Clinton and helped counsel Rochester officials to earn the status.
“Jim was a huge help to us,” said Chris Coe, a firefighter and EMS coordinator who spearheaded the city’s drive to become a dementia-friendly city last year. Rochester’s programs have received strong business and community support, helping Coe and civic leaders create a nonprofit organization, Friendly Rochester, which is soon unveiling a website, www.friendlyrochester.org.
One Rochester program to be rolled out this summer, created with a $7,000 grant from the Community Foundation of Greater Rochester, will give free locator bracelets with QR codes that identify emergency contacts and phone numbers for police departments for people with dementia who might wander from their residences, a common problem among people living with some of the disease’s hallmark symptoms of confusion, anxiety and restlessness.
Marl said other civic officials who want programs like Saline’s. He ranks the designation as one of the city’s major accomplishments, right with its schools and parks and recreational offerings.
Earning the title requires partnerships with other community organizations. For details, go to https://dfamerica.org/.