Duluth research team studies dementia in Indigenous, rural communities

DULUTH — Researchers at the University of Minnesota Medical School’s Duluth campus are making connections with Indigenous and rural communities to study the perceptions and caregiving approaches toward dementia.

The Memory Keepers Medical Discovery Team’s goal is to expand resources and understanding of Alzheimer’s disease and related dementias to promote earlier interventions and better access to care.

According to Memory Keepers Executive Director Kristen Jacklin, there’s very little research being done to improve outcomes of dementia in rural areas and among Indigenous people. The Memory Keepers, which formed its team about seven years ago, have taken time to establish relationships in communities to build trust before they began researching.

“The kind of research that we do, we work with populations who have a greater hesitancy to work with universities for different reasons,” Jacklin said. “In the case of Indigenous communities, there’s a dark history of university researchers abusing their power and conducting unethical research with their community members. That’s something that’s difficult to overcome and can only be overcome with very careful relationship development and trust development with the communities.”

Significant progress has been made on the Indigenous-focused side of the program. The Indigenous Cultural Understandings of Alzheimer’s Disease and Related Dementias–Research and Engagement program is examining the culture- and community-specific context of dementia in Indigenous populations. ICARE is partnered with the Grand Portage and Red Lake bands of Lake Superior Chippewa in Minnesota and the Oneida Nation in Wisconsin to learn more about how to overcome disparities in treatment and early intervention for the disease.

While the Memory Keepers and other Medical Discovery Teams from the University of Minnesota were created with state funding, there have been other significant grants awarded to sustain the program after its creation. ICARE received a $7.5 million grant in 2021 from the National Institutes of Health to fund the study for five years.

This money helped secure community-based researchers from the communities to conduct interviews with physicians, administrators, traditional knowledge keepers, healthy older adults and people who are or were caregivers for loved ones with dementia. The program will eventually interview people who are themselves experiencing various stages of dementia.

Jacklin said the Memory Keepers need community researchers because they have an understanding of the context and backgrounds in the community that an outside researcher doesn’t have.

“It takes extra time, it takes extra resources to do that kind of work, but that’s what that core state funding that’s been allocated to us allows us to do — to put these structures in place to allow for real community participation,” Jacklin said.

January Johnson, a community researcher at Red Lake, said she’s noticed a lack of dementia-exclusive services in her area, but has also noticed more educational opportunities about dementia and caregiving available to the community thanks to members of the advisory board, which is a group of tribal members with dementia expertise or caregiving experience who meet frequently alongside the Memory Keepers.

“I do have hopes that this research will get much-needed dementia resources here within the community,” Johnson said. “I feel that it’s important that we are addressing these service gaps surrounding dementia resources. When people are sharing their experiences through these interviews, we are able to document it and use that information to support our need for these services and resources within our communities when applying for grant funding.”

Jacklin said it’s become clear that many of the resources used for dementia in Western medicine, like cognitive assessments and caregiving guides, are not culturally appropriate for most Indigenous populations.

In Western medicine, dementia is defined in various stages of early, moderate and advanced symptoms, which begin with forgetfulness and subtle personality changes, then progress into trouble with thinking, reasoning and eventually living independently. However, these symptoms are not always interpreted the same way by Indigenous people, where it’s sometimes seen as a natural part of life and aging.

“It’s like the circle of life,” said Collette Pederson, a community researcher in Grand Portage. “They go out (into adulthood) and then they come back to being a child again, and who are we to say if that’s wrong? I think there’s so much truth to that.”

Jacklin said the Memory Keepers are approaching their dementia research with “two-eyed seeing": a method of incorporating the strengths of both Indigenous and Western knowledge and values, with the goal of creating better outcomes by taking both perspectives into consideration.

The Memory Keepers have also noted that people in rural and Indigenous communities are likely to wait longer to seek health care for dementia symptoms, often waiting until an emergency occurs. There are often few specialized resources like neurologists available in rural areas, so many people with dementia will sometimes only see their general practitioner for help, and often during later stages of progression.

Jacklin said they hope by raising awareness about dementia in these communities, there can be more early interventions, which include lifestyle changes like increasing exercise, improving diet and addressing risk factors.

Pederson said in the three years since she’s been a community researcher at Grand Portage, she’s seen an increase in the community’s conversations about Alzheimer’s and related dementias.

“From what people are learning through this process, the awareness has brought out more people talking about it and realizing, ‘Oh, that’s what So-And-So had,’” Pederson said. “Knowing that the people in the community themselves know more about dementia helps a lot for being willing to understand and help these people.”

Jordan Lewis, associate director of the Memory Keepers, focuses on the caregiving aspect of dementia in Indigenous communities. He has found from conversations with Alaska Natives and members of the White Earth Nation that caregiving methods have also been created with Western ideals that don’t exactly translate to the band’s cultural practices.

For example, Savvy Caregiver — a nationally popular dementia training program for family caregivers developed by the University of Minnesota — doesn’t account for knowledge from community elders who have caregiving experience, which is a main source of trusted information among caregivers in White Earth Nation.

“The content is great, but the values of Native people are not there,” Lewis said. “They were interested in this idea that, can we take that program and can we make it more user friendly and more culturally appropriate to our community? So the work I’m doing now is really looking at taking that program and adding a peer component. Every caregiver you talk to, they get the bulk of their information, and their most reliable information, from someone who’s been through the process.”

He also wants to create more resources for family caregivers to use after their loved one with dementia is no longer in their care. Lewis said there are very few studies that talk to people post-caregiving, when people may struggle with re-entering social circles or returning to work after caring for someone full time.

Lewis and Jacklin acknowledged that creating culturally appropriate methods for Native Americans will vary somewhat between different tribes, bands and regions. They’re hoping the base models the Memory Keepers create will be adaptable for each community to make it work best for them. And they’re not trying to reinvent the wheel — or, in this case, the cognitive assessment and the caregiving programming — they just want to add foundations to support Indigenous people to better access dementia resources.

“We’re really interested in how we bring the knowledge systems together without colonizing their knowledge system, so that we can be respectful of their knowledge of dementia but also ensure that they have equitable access to the resources and support that other people do,” Jacklin said.

The Memory Keepers Medical Discovery Team is named for more than just memory as it relates to Alzheimer’s and related dementias. In many American Indian cultures, tribal elders are responsible for preserving and teaching sacred medicinal practices, songs and stories. The Memory Keepers want to ensure that these traditions and wisdom are preserved through generations by helping promote cognitive health.

Lewis said it’s important to him to remember the stories they’re learning in their research and to see the people for who they are and not the symptoms they are exhibiting. In addition to passing down traditions, Lewis hopes they can also help communities pass down dementia care knowledge.

“I think through Dr. Jacklin’s work and the work we’re doing with caregivers, we’re trying to capture those stories, that knowledge, of how you can live well with this disease or as a caregiver, and as a community, how you can support those individuals to do that and not always focus on this disease and this biomedical model,” Lewis said.

Johnson said she’s seen how being a caregiver for a loved one with dementia can be draining, both emotionally and physically.

“I believe that caregivers are some of the strongest people because they do take on a huge undertaking, which unfortunately sometimes costs them their own health by the stress that they are under,” Johnson said. “As part of our Anishinaabe culture, traditionally we've always taken care of our family and our elders, so it isn't ideal for us to place them in an institution when caregiving gets very demanding.”

She added that keeping people with dementia in their familiar environments at home can be helpful for slowing progression of the disease, and hopes there will be more home care services available for Red Lake and other rural and Indigenous communities.

Pederson said she’s noted similar problems in Grand Portage. Pederson has started an Alzheimer’s Association caregiver support group, unaffiliated with the Memory Keepers, to give people a space to talk and connect with people who have similar experiences.

“They get so worn out and it makes some of them sick, even. They really have to be taken care of,” Pederson said of caregivers. “We don’t have anyone that can go into the houses and take care of these people for caregivers to take a day off or something. We don’t have that.”

Even the community researchers themselves have created a support group among themselves to check in after difficult interviews or when the research becomes too heavy.

“I’ve become more aware that Alzheimer's disease or related dementia affects more than just a person’s memory,” Johnson said. “It really does affect their whole cognition — their thinking, their judgment, the way they learn, language comprehension, their attitudes, ability to plan — all that is affected. And in later stages, ultimately their physical domain is affected.

"It’s a really tough disease because you have to go through losing your loved one not once, but twice. You lose them when their essence of who they are starts to change, and once again in the physical sense," Johnson said.

The entire Memory Keepers Medical Discovery Team is made up of about 30 people and counting, including University of Minnesota faculty, senior research associates, graduate staff, postdoctoral associates and community researchers. The staff has a wide range of specialties, including anthropologists, geographers, nurses, sociologists and data analysts.

The Memory Keepers also have an interest in rural dementia care. Wayne Warry, director of Rural Health Initiatives, is leading work similar to the ICARE efforts in rural regions of Minnesota. The rural research is not quite as far along as ICARE, but there’s a significant overlap between people who live in rural areas and Indigenous populations.

The Memory Keepers are one of four Medical Discovery Teams with the University of Minnesota Medical School. The teams were created in 2014 to increase research efforts to improve population health and health care experiences while recruiting and retaining research staff and students. The other teams, which are based in the Twin Cities, study addiction, the biology of aging, and optical imaging and brain science. The teams were created with state funding supported by Gov. Mark Dayton and the state Legislature.

Jacklin said faculty and administration at the Duluth campus of the medical school were strong advocates that one of the Medical Discovery Teams be based in Duluth. The team was originally focused on health disparities in rural and Indigenous populations, but that topic was extremely broad. Neil Henderson, the first executive director of the Memory Keepers, guided the focus toward Alzheimer’s and related dementias. Henderson retired in 2021.

“It was an innovative model that was negotiated between the state and the dean of the medical school,” Jacklin said. “And to make the investment outside the Twin Cities, to give Duluth a chance to show what Duluth can do and address issues that are important to the northern part of the state, it’s just been incredible and that funding has been vital to our success.”