Transforming brain health assessment for Indigenous populations

Dementia is a growing concern in Indigenous communities, and rates of diagnosis are on the rise compared to other populations in Canada. The reason is rooted in the historical impacts of colonization, like residential schools, that created intergenerational trauma and unequal access to medical care, food security and other determinants of health. Now, an Indigenous-led team is endeavouring to transform the way brain assessments are done, to improve outcomes for these communities.

The project “Weaving Indigenous Community-led and Interdisciplinary Research to Develop Culturally Safer Wholistic Brain Health Assessment”is “truly Indigenous-led,” says Jennifer Walker, the nominated principal investigator. Walker is an epidemiologist and health researcher at McMaster University, and a Haudenosaunee member of the Six Nations of the Grand River.

Recently, she has seen more Indigenous nations and communities be proactive when it comes to brain health—but it has not been a coordinated effort.

“These little fires were starting to burn, where Indigenous communities were addressing dementia and brain health in their own ways and I thought, ‘If we brought this research and these experiences together, we could build something really strong.’”

Weaving together brain health knowledge

Supported by a $24 million grant from the 2024 competition of the New Frontiers in Research Fund Transformation stream, the research team includes members from eight Indigenous community organizations and 14 universities across four provinces, bringing together First Nations, Métis and western perspectives.

Several team members have stories about how the lack of access to assessments, as well as cultural biases, is stymying efforts to care for Indigenous Peoples with dementia. One team member’s mother became increasingly ill, but lived alone in a remote community—too far to have access to assessment resources. In another case, a loved one was misdiagnosed with dementia and lost their independence.

The goal is to weave together these diverse knowledges and experiences into something strong, the way a handmade basket is made. In this case, the final product will be a bundle consisting of assessment tools, training materials and guidance that a community can use to address rising rates of dementia. For many Indigenous Peoples, a bundle is a sacred set of items and medicines that an individual gathers, cares for and uses when needed.

Pamela Roach, a Métis health services researcher at the University of Calgary, is excited to be part of such an important undertaking. In her role, she will work closely with the Métis Nation of Alberta to do data collection, host brain health fairs and bring the community’s experiences back to the larger team.

“I think what's really transformative is the fact that this project will be grounded in Indigenous worldviews in multiple communities across the country,” Roach says.  

The overarching goal is to improve Indigenous Peoples’ relationship with dementia, from noticing signs, to seeking help, to getting assessed and securing care. It’s important to the researchers to do this in a way that is both culturally appropriate and relevant, as well as improves the safety of Indigenous Peoples within the health-care system.

Roach shares that some Métis people may use a different lens to understand dementia, compared to what she sees in western medicine. “It’s not seen as a deficit. You’re just changing, like your state of being is changing. The way a lot of western assessments are done, you’re looking for, ‘What is this person losing the ability to do?’ As opposed to, ‘This is what they are able to do.’”

Rethinking cognitive assessments

Indigenous communities have limited access to brain health assessments, which can lead to underdiagnosis. Many of those assessments also have a western medicine bias, which can lead to an inaccurate diagnosis.

Walker explains, “If you think about how one would assess cognition—like how well you’re thinking about things, how clearly you’re thinking, how well you’re remembering and the organization of your thinking—a lot of that is culturally influenced, influenced by education, influenced by ways of knowing and perceiving the world.”

Toward better outcomes

One important aspect of the project’s work will happen at the intersection of education and health-care service delivery. The bundle will give health-care providers the tools to provide an accurate diagnosis, which they can then use to collect better data and implement systems of care for people.

“We’re not expecting every health-care provider in the world to be super skilled with Indigenous ways of knowing,” Roach says. “But we want them to have a set of tools, and for patients to know they’re being helped by someone who can understand them. This will lead to earlier diagnosis and more support for patients, their families and the community.”