A group of researchers at the University of Minnesota is working with the White Earth Nation on ways to provide resources and other help for people who work as caregivers for those who are suffering from dementia.
The idea behind the project is to create a more supportive structure for caregivers — many of them unpaid family members who work with few resources and often without a complete understanding of the disease.
It’s a timely venture as Minnesota’s caregiving infrastructure is bound to change along with the state’s demographics.
Minnesota’s population above 65 years of age is growing substantially; according to estimates, by 2030 about 25% of the population will be 65 years of age or older. Moreover, while there were about 22 people 85 years of age or older for every 100 potential caregivers in 2020, that number is estimated to jump to 38 by 2030, estimates show.
“There’s this huge increasing need for people to not only just be caregivers but (to) work in the aging field in general,” said Jordan Lewis, the associate director of the university group involved in the effort, the Memory Keepers Medical Discovery Team at the medical school campus in Duluth.
From his research on caregivers in Alaska, Lewis knows many caregivers in Indigenous communities were seeking more structure and understanding of the diseases that afflicted the people they were taking care of.
He said caregivers want “some level of education” about dementia and Alzheimer’s — what they can expect, for instance, or how the disease progresses — as well as information about support that is available in the community or from various government agencies.
Some caregivers are certified and paid to take care of others. But more often than not, especially in Indigenous communities, people act as caretakers without realizing it, Lewis said.
By 2025, the number of Minnesotans with Alzheimer’s is expected to increase 21.2% from what it was in 2020 to 120,000 people, according to an annual report from the Alzheimer’s Association. According to that same report, in 2023 Minnesota had an estimated 164,000 caregivers who provided about 225 million hours of unpaid care during the year.
Disparities in rural areas
Research also shows that rural residents are two times more likely to develop Alzheimer’s and related dementias than the U.S. population as a whole. Indigenous rates of Alzheimer’s and related dementia, meanwhile, are approximately three times higher, with a 10-year earlier onset, research shows.
The Memory Keepers Medical Discovery Team — which focuses on brain health equity in rural and Indigenous populations — was funded in 2016 by the Legislature with a $15.6 million, 10-year initiative that runs through 2026.
The team has several research projects underway to examine these disparities and how rural and Indigenous communities can best prepare for their impact.
“We have a wealth of knowledge from our elders or people who’ve been caregivers that if they’re ready, in that part of their journey that they’ve healed through the loss and all the other experiences that they’re ready to be a mentor for someone else,” Lewis said. “Why haven’t we looked at peer mentors as a resource for caregivers who are in that journey now?”
Many of those caregivers are doing the work without calling themselves a “caregiver.”
“They just kind of step up. It’s not even a volunteer thing,” said Josyaah Budreau, a researcher with the Memory Keepers Medical Discovery Team and a member of the Fond du Lac Band of Lake Superior Chippewa. “It’s just a, ‘Hey, this is my grandma. She cared for me when I was younger.’ It’s taught to us culturally that we want to be there for those that took care of us and that’s just the way that the circular kind of model works is that those that cared for you when you’re younger, you care for them as they age.”
The Duluth team is involved with several other projects around brain health, one of which involves research to address dementia disparities by examining how culture- and community-specific context shapes Alzheimer’s and related dementia experiences in Indigenous populations. Other projects include data visualization of the state’s population, Alzheimer’s death rates and the number of hospitals, clinics and providers.
Ava Kian is MinnPost’s Greater Minnesota reporter. Follow her on Twitter @kian_ava or email her at [email protected].
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