The number of cases of Alzheimer’s disease and other forms of dementia is on the rise in Minnesota, from nearly 100,000 people over the age of 65 diagnosed in 2018 to a projected 120,000 in 2025.
This year, the Minnesota Board on Aging awarded grants totaling $729,172 to 11 state organizations that work to increase awareness of dementia, support individuals with the disease and their caregivers, and promote early diagnosis and treatment.
Kari Benson, executive director of the Minnesota Board on Aging, explained that each year nonprofits around the state are asked to apply for the grants, which are funded through the Minnesota Legislature. Members of an external review committee looked over this year’s applications, with a goal of making sure that each region of the state had at least one grantee. Final selections were made in cooperation with board staff. “It’s a pretty intensive process,” Benson said.
This year, proposals came from a range of organizations that serve Minnesotans from a variety of backgrounds. Alzheimer’s disease and other forms of dementia impacts everyone in the state; the grants’ wide range should help reach more people than ever before, Benson said.
“We are funding projects focused on reaching Native American elders; LGBTQ+ older adults; older adults of color; older adults in rural, isolated areas — all with a focus of bringing information and support to older adults with Alzheimer’s disease or related dementia and their caregivers in a way that works for them.”
MinnPost spoke with representatives from two organizations that were awarded Board on Aging grants totaling more than $100,000 who told us about their work — and how they plan to use the funds.
D-CAN: ‘We’re here to provide hope’
After a person is diagnosed with Alzheimer’s or dementia, a typical first response is to make an appointment with a specialist to learn more about the disease, get a prognosis and hear about potential treatments.
The only problem is that physicians specializing in dementia care are so busy that it can take months to schedule a first appointment. The Central Minnesota Dementia Community Action Network (D-CAN), a St. Cloud-based nonprofit focused on improving access to quality dementia care, is helping people understand more about their diagnosis and coordinate management of their treatment.
When the organization was founded four years ago, Pat Zook, D-CAN director and a St. Cloud-based family physician, said he learned about the frustrating wait that many people endure before they finally get in to see a specialist. “When we started it was taking five months to get in to see a neurologist,” Zook said. “To get a psychiatry consultation, they just said no. There wasn’t even a waiting list.”
Zook and his colleagues realized that a dementia diagnosis, when combined with months-long waits to see a medical professional, was creating stress and anxiety, not just for patients, but also for other members of their family. “We Minnesota caregivers never admit we need help,” Zook said. “By the time you admit you need help, you let it go too far. This is a mental health issue for the caregivers.”
The organization’s founders wanted D-CAN to be a place to help fill in the gaps in dementia care. “We heard from a lot of people who said they wanted more,” Zook said. “Certainly they had questions about drugs, but 90 percent of what people needed was informed answers to questions like, ‘What do I do when Dad does this?’ ‘What do I do when this happens?’ ‘How do I plan for tomorrow?”
At D-CAN, clients get a thorough exam and analysis: Staff reviews records from their primary care providers and provides a comprehensive list of recommendations for care, treatment and prevention “Our approach is to look at dementia risk factors,” Zook said. “Some you can’t change, like your age or your family history, but you can change your diet, improve sleep, reduce stress, engage in healthful things and intellectual and creative activities.”
In response to the long wait times that many people with Alzheimer’s or other forms of dementia face before seeing a physician, D-CAN works hard to get clients in quickly, with a focus on reducing stress and providing key information and advice in a timely manner.
“We get them in as soon as we can,” Zook said. “The only barrier is how long it takes to obtain their medical records.”
Tami Kolbinger, a certified dementia practitioner and D-CAN care navigator/educator, said that many clients are referred by their primary-care physicians. Others may learn about the organization through one of the many support groups it offers.
When a client comes in for a D-CAN appointment, they will usually first meet with Kolbinger “We take a team approach,” she said. “I do the initial intake and hand that off to Dr. Zook and he will decide what is the best approach for that particular client.”
Unlike a typical medical appointment, which can feel rushed, staff at D-CAN take time with clients, evaluating their individual situation and presenting options for care. At the end of their visit, each client is given a detailed report, averaging 5-6 pages long, that looks at every aspect of their care and makes recommendations.
“It is not a 20-minute eval,” Kolbinger explained. “It could be a three-hour eval.”
This year, the Minnesota Board on Aging awarded D-CAN $150,000. Zook explained that the greatest portion of the grant will go to pay for two positions — Kolbinger’s, and an executive director that Zook explains the board is “very close” to hiring.
The organization is excited about the opportunities that the grant provides, Kolbinger said. She believes that her and her colleagues’ role is to be a light in the darkness that a dementia diagnosis can create. “We’re here to provide hope that is it is not the end. That there are things we can do. We’re not providing a cure, not giving false hope, but we want to provide information that there are things you can change in your life to live a better live after you receive that diagnosis.”
Walker West Music Academy: ‘Watching miracles happen’
As program director for Walker West Music Academy’s Amazing Grace Chorus, a choir for people age 55 and older whose lives have been impacted by Alzheimer’s disease or other forms of dementia, Shana Moses regularly witnesses the power of music to bring people living with dementia out of their shells and back into the world.
“It is almost like watching miracles happen before your very eyes,” Moses said. Singing songs, especially songs that hearken back to their younger days, can help stir memories for people with dementia. When they hear the music, it’s like a switch is flipped. There’s one vocalist, for instance, who needs assistance just to walk to the microphone, Moses said, but once the music starts, “once the beat drops and she gets into the lyrics of the song, she’s suddenly walking down the aisle and holding the mic with her right hand and pointing with her left.”
This, Moses said, is a clear example of the healing power of music: “By the time the music stops and she puts down that mic, she might need help getting back to her seat again.”
Amazing Grace Chorus is more than a choir, Moses said. It is a support group of sorts for people living with dementia and those who love them. You don’t have to have dementia to participate. Because the choir’s focus is on music centered in gospel roots, participants, the majority of whom are Black, feel at ease and open to discussion and learning.
“We center on music and use it as a vehicle to, one, dispel myths connected to dementia, and two, to center ourselves to cultural memory in the African American community.”
During COVID times, the choir, which boasts as many as 35 members, has been particularly helpful for its intended audience. Since the start of the pandemic, they have been meeting and singing together virtually, and now offer biweekly optional in-person, socially distanced and COVID-safe rehearsals for those who are interested. Because of the new variant, organizers say they may lean toward the online option.
For participants, the chorus has been a highlight in what feels like a dark time. “It has been a vehicle to disrupt isolation,” Moses said, “to melt some of that away.”
Meetings focus on singing, with added time spent on education about Alzheimer’s and other forms of dementia. “We have something called our ‘golden nuggets,’ little tidbits to remember and hold on to around healthy aging,” Moses said. “We have health and wellness components and we have a nurse who is connected to Black Nurses Rock. She talks about statistics attached to dementia and how that impacts Black folks.”
Weaving in the education piece is important, Moses believes. Black women are diagnosed with Alzheimer’s disease at higher rates than the general population, and information about treatments and support, when it comes from trusted friends and community members, is better received by a population that often distrusts the mainstream medical community.
“It creates the perfect group to be messengers and folks who can spread the news about healthy aging and important pieces around Alzheimer’s and other forms of dementia,” she said.
Unlike a typical choir practice, Amazing Grace’s meetings are a “packed-full 90 minutes,” Moses said. She invites local gospel artists like Billy Steele or Robert Robinson to perform classic songs for members “We ask them to sing something that their elders might have sung. It’s so beautiful. Our members don’t always hear the songs they grew up with anymore.”
This cycle, the Board on Aging awarded Walker West Music Academy a grant of $108,600. The funds give Moses and her colleagues money to provide stipends to guest artists who come to chorus meetings. Grant funds also support salaries for Moses; Carl Clowman, Amazing Grace music director; Gale Cannon, Amazing grace program coordinator; the nurse and health and wellness coordinator; as well as a discounted rate for music lessons for people age 55 and up.
The thing that makes Amazing Grace work is the music, Moses said. Singing songs from their youth gives participants “that feeling of a warm blanket. It triggers the memory back to an earlier time. It ends up being a nice, well-seasoned gumbo.”