Study of dementia adds crucial missing data on Native Americans

Of the several thousand enrollees in the nation’s largest Alzheimer’s disease (AD) blood test research study, exactly two were Native American. 

That and similar statistics drove William Mantyh, an assistant professor of neurology in the U of M Medical School, to reach out for help with a new Indigenous-focused dementia research project. A major goal for Mantyh and his team: to learn whether a promising diagnostic blood test for the disease was as accurate for Native Americans as it appeared to be for European Americans.

Eager to participate, leaders of the Bois Forte Band of Chippewa in northern Minnesota stepped up.

“Although some of our tribal elders are distrustful because of things done in the past, in general we were very receptive to this research,” says Cathy Chavers, Bois Forte tribal chairwoman, president of the Minnesota Chippewa tribe, and a participant in Mantyh’s study. 

Chavers has worked in health care for almost three decades and knows well the importance of clinical research. 

“There is very little research specifically about Native Americans, and we urgently need more data about the many health problems—dementia, substance abuse, diabetes, heart disease—that are so common on reservations,” she says.

The Bois Forte Band occupies a reservation stretching across 80,000 acres of Minnesota wetlands, lakes, and forest just 40 miles south of the Canadian border.

“Being so isolated is one of our biggest challenges as a tribe,” notes Bois Forte Band member Corey Strong, who also serves as patient benefits case manager for Bois Forte Health and Human Services. “Our band members have to travel 60 miles to the closest full-service hospital for most specialized care.”

Research that benefits everyone

In visits during 2021 and 2022, Mantyh and his team met with each of 38 tribal elders (those 55 and older) who had agreed to take part in his research. Their study included 90-minute visits with each elder, plus a memory test, blood draw, and MRI. Mantyh then went over the results of the tests with each participant. The elders, says Chavers, expressed keen interest in learning more about their brains and about dementia.

Initial results suggest that, as Mantyh suspected, the promising diagnostic blood test for AD may not deliver accurate results for Native Americans.

Key to Mantyh’s successful search for a tribal connection was the Duluth-based Memory Keepers Medical Discovery Team, which focuses on reducing health disparities in Indigenous communities and has considerable expertise working with Indigenous people on research that is valuable to them. 

“This research is one of the coolest things Bois Forte has been part of,” says Strong, who oversaw logistics and recruited elders for the study. “This is research that won’t just, ultimately, benefit Bois Forte or even just Minnesota, it will benefit everyone.”

Learn more about this groundbreaking work.