Where Discovery Creates Hope

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A monthly series:

Where Discovery Creates Hope

No memory is too small. Helping rural and Indigenous communities find their way through the gathering darkness of dementia.

January Johnson’s work could help lead to a brighter tomorrow.

She’s a community researcher for the state-funded Memory Keepers Medical Discovery Team at the U of M Medical School, Duluth Campus.

Johnson and her colleagues tackle a disease that slowly dims the light of way too many of our loved ones – dementia.

Their focus is on our rural and tribal communities, where, for unknown reasons, memory loss is growing at much higher rates than in our urban areas.

The team’s mission of finding help and hope is all the more pressing for Johnson: She’s from the Red Lake Band of Chippewa where treasured elders, and the cultural knowledge that they pass on, are most at risk.

Observes the team’s leader, Dr. Kristen Jacklin: “There’s been a lot that’s happened to Indigenous communities that have led to their stories, their songs, their medicine being lost or pushed underground. Dementia is one more threat. We’re here to find ways to prevent or maybe one day even cure the disease.”

Memory Keepers Medical Discovery Team

We’re very careful who we bring into this circle

Memory loss, by its very nature, is a sensitive subject. But, with urban solutions often pushed on small towns and the Indigenous community’s historical mistrust of government policies and institutions, it’s even more so.

The team, as a result, has developed a collaborative approach, hiring community members like Johnson to help with the work and forming advisory groups, including one with an elder from each of Minnesota’s 11 Indigenous bands.

Says Rick Smith, the group’s chair and a member of the Red Cliff Band of Lake Superior Ojibwe: “My role, with the help of the group, is to make sure things are done in a respectful and culturally appropriate way.”

I wanted to bridge these two worlds

Even Jacklin, the team’s executive director, brings insider ties of her own to the work. She grew up in a small town in Northern Ontario and saw healthcare disparities, not to mention racism, first hand.

While schoolmates went off to tackle health issues in fun exotic places, she couldn’t ignore the work that was needed in backyards like hers.

She was also keenly aware that there was beauty and strength in close-knit rural communities that even urban areas with all the resources in the world could learn from.

“We talk a lot about two-eyed seeing,” Jacklin says. “It’s about valuing both the lens of the Indigenous way of looking at things and the Western academic way.”

Adds the team’s associate director, Dr. Jordan Lewis, whose mom is Aleut: “I grew up around older adults who looked forward to becoming an elder. How can we translate that to our younger people?”

The team’s work is needed now more than ever

One of the promising areas of the team’s research highlights the unique challenge of dementia in rural communities. Independence, particularly of movement, is almost as important as air where the nearest grocery store might be a half-hour or more away.

Fear of losing that ability makes it difficult for someone, even family, to report early signs of memory loss. And, for a caregiver, there’s always the worry of their loved one wandering off.

The team is working with a company that makes a watch-like device that can monitor a loved one’s movements. Not just a trip to town or a friend’s house, but tiny movements, too, that indicate the progression of the illness and can lead to earlier intervention and more effective care.

“It’s based on life space,” says Dr. Wayne Warry, the director of the team’s rural health initiatives. “When you’re young, you move about in larger spaces. But, as your health deteriorates, in particular your memory, that life space shrinks.”

I’m not fluent in our language – but, one day, I plan to be

Johnson’s culture gives its people three names. They are given one at birth, one as an adolescent and a final one as an adult.

She never received her first two names, but as her band struggles to regain a culture taken from them, she’s going to make sure she gets her third name.

What she calls the elders who will give her that name captures the hope of her team’s work – especially for a culture that has relied on the oral tradition to pass on its secrets:

“Knowledge keepers.”

Impacts of dementia in Minnesota

Dementia is a broad term that describes loss of memory and other thinking abilities like problem-solving, using and understanding language, and perceiving the world around us.
The most common type of dementia, Alzheimer’s disease, accounts for 60-80% of diagnoses. Other types of dementia include Lewy body dementia (5-10%), vascular dementia (5-10%), and frontotemporal dementia (5-10%).
In Minnesota, nearly 100,000 people above the age of 65 are living with dementia and will eventually need increased support. In many cases, families provide care.
Every person, every family, every community impacted by dementia has a unique way of viewing dementia and caregiving. Memory Keepers focuses on dementia care in Native American and rural populations.
Each Native American community has its own view of dementia; some see it as a natural part of life, and for some, caregiving extends beyond the family unit to include the entire community.
In rural areas, dementia has different challenges. Some people may avoid a dementia diagnosis fearing loss of independence, for example losing a driver’s license.
Developing better dementia care requires in-depth understanding of the culture and community, as well as the family and individual affected.



University of Minnesota Medical School Memory Keepers Medical Discovery Team

420 Delaware Street SE | Minneapolis, MN 55455