Duluth-based researchers probe indigenous dementia

Can you name the prime minister of Canada?

You probably can, and if you're Canadian you almost certainly can. That's why the question is asked in Canada as part of the diagnostic assessment of whether a person may have a form of dementia.

Only it turns out, it wasn't a helpful question for First Nations people - the equivalent of Native Americans in the U.S.

"People pointed that one out," Kristen Jacklin said. "They said, 'Ask me who the chief is. I know that.'"

A native of Parry Sound, Ontario, Jacklin spent 20 years conducting medical anthropological research among seven First Nations bands on Manitoulin Island in Lake Huron, including 12 years with the Northern Ontario School of Medicine. Her research was community-based, she said, meaning it was driven by what community members wanted to know. She started with a focus on diabetes, but at the request of the island's indigenous people, switched to dementia.

Both Jacklin's research and her method led to her invitation to join the University of Minnesota Medical School's Memory Keepers Medical Discovery Team, said Neil Henderson, executive director of the Duluth-based program.

Her team's dementia research in Canada matched the sort of research he had carried out among tribes in Oklahoma, Henderson said. "To bring us both together in the same place with experience in indigenous dementia from two different parts of North American would seem to be entirely additive. And I think that's what it has proven to be."

The community-based approach Jacklin uses was equally compelling, Henderson said.

"Classical science has more of a perspective that we're going to fix what is wrong with you; you will be our research subjects, and we'll go from there, rather than a community collaboration," he said. "They had approached it that way. ... I could see that the approach they were using was the way it should be done but seldom is."

The attraction was mutual. Although Jacklin said she continued to find her work on Manitoulin Island fulfilling, she was impressed by the commitment to medical research in Minnesota, and there'd be more staff support than she'd had in the past. She'd be able to continue supervising her work on the island, and she had the blessings of those with whom she'd worked to move on.

A couple of members of her team - including her husband - came with her, and now they're in the first year of a project dubbed "Indigenous Cultural Understanding of Alzheimer's Disease and Related Dementias - Research and Engagement," somehow tagged with the acronym ICARE.

They're funded by a two-year grant from the National Institutes of Health, Jacklin said, but that will be only enough to scratch the surface.

"I think that's the challenge for non-indigenous researchers as they become allies," she said. "You have to have patience and understanding that it's going to take time for communities to trust you."

The ICARE project is taking a Great Lakes regional approach, Jacklin said. In Minnesota, her term will work with three Chippewa tribal communities, although it's too soon to identify them publicly, she said. They're also working alongside with the University of Wisconsin Alzheimer's Disease Research Center, which has a partnership with the Oneida Nation. The First Nations of Manitoulin Island also will continue to be involved.

Dementia seems to be an appropriate subject. The data are limited, Jacklin said, but what has emerged from studies in the U.S., Canada and Australia suggest higher rates of dementia among indigenous populations than in the general population. The onset of dementia averages 10 years sooner among indigenous people, and the prevalence of dementia is increasing at a greater rate among them.

The point is not just to do research but to produce action, Jacklin said. In Canada, the research has produced a set of six indigenous dementia fact sheets. Communities in Minnesota and Wisconsin have been asking for something similar here, she said.

Another is a soon-to-be-published cognitive assessment tool for indigenous people, which also is in demand south of the border. The existing tools, when applied to First Nations individuals, is thought to be inaccurate both by doctors and nurses in the community and thought to be offensive by those who have been screened, Jacklin said.

"Everybody would agree that it's not working and it's misdiagnosing - both probably over-diagnosing and under-diagnosing," she said.

One more example:

A question in the cognitive assessment asks how many words beginning with "F" the person can name within a given time period. This is challenging, Jacklin said, for someone whose first language was Ojibwe, which has no words starting with "F."

Even though the quiz was in English, a woman told Jacklin, she had to translate Ojibwe to English in her mind. The woman finished the story like this:

"Now I can think of a bunch of them. But at that time, I could only think of one word that started with the letter 'F,' and I really wanted to say it."