Reframing dementia care for Indigenous communities
How a culturally grounded assessment tool—adapted from Australia and shaped by Anishinaabe knowledge—is transforming dementia care

Dr. Jennifer Walker, a member of the Six Nations of the Grand River, has long understood the importance of caring for Elders.

"I remember my grandma was a personal support worker on reserve and she worked in nursing homes and in people's homes providing home care. And she used to take us with her when I was little."

Those early experiences shaped her path toward tackling one of today's most complex health challenges: dementia.

When dementia is misunderstood, people can be overlooked or misdiagnosed. For many Indigenous communities in Canada, that risk is all too real.

Rates are rising across Canada and may be disproportionately higher among Indigenous populations. Yet access to care remains uneven, and common diagnostic tools often don't reflect Indigenous languages, worldviews or lived experiences. First Nations, Inuit and Métis Peoples may also understand memory loss and confusion differently than Western medicine does, making standard assessments a poor fit.

This disconnect was first documented by Dr. Kristen Jacklin at the Northern Ontario School of Medicine. She found that widely used tools were often ineffective in Indigenous contexts. In response, some health care providers began adapting them informally, but that introduced new problems.

Dr. Walker explains: "Health care professionals were changing the way they do the assessments on the fly, because they were trying to do them in a better way, but then they're not a validated, reliable assessment anymore because they're changed every time they're done."

A new approach was needed, one grounded in both science and community knowledge. Dr. Walker, one of few Indigenous epidemiologists, joined a collaborative effort to adapt the Kimberley Indigenous Cognitive Assessment, originally developed in Australia, for Anishinaabe communities on Manitoulin Island.

The result: the Canadian Indigenous Cognitive Assessment (CICA).

Its development was iterative and community-led. The tool was translated into Anishnaabemowin and back into English, with ongoing input from many communities to ensure questions and images reflected local realities. It draws on Anishinaabe ways of knowing, incorporating familiar references such as seasons and animals.

Along the way, unexpected challenges emerged.

"Asking about seasonal changes was at first translated into 'what is happening in the environment right now?'" Dr. Walker recalls. "But when we pilot tested that, people started thinking about climate change and feeling sad, and that was not where we wanted to go. We were like, oh no, that's not what we're asking."

Moments like this underscored how critical context is in assessment, and how easily meaning can shift. They also reinforced the need for tools that truly reflect the communities they serve.

The CICA has since been adapted for other Indigenous groups, including Inuit and Nakota communities, requiring a careful balance between cultural relevance and scientific rigour.

Without appropriate tools, Dr. Walker notes, there is a risk of both under-assessment and over-diagnosis, particularly where access to care is limited. She emphasizes that no single tool is enough: proper diagnosis must also consider a person's general physical health, environmental factors, and aspects like depression to understand overall brain health.

Now, with support from a New Frontiers in Research grant, the work is expanding. A comprehensive assessment bundle—combining tools, training, curriculum and policy—will help ensure care is not only accurate, but culturally safe.

The goal is not just better diagnosis, but better outcomes.

"Because the last thing we want," says Dr. Walker, "is to have a whole bunch of new people getting diagnosed with dementia properly, but with no supports in place."

The initiative is being implemented across five sites, spanning urban, rural and remote settings. By bringing together diverse perspectives and health-care realities, the team aims to scale up this approach, shaping a more inclusive, responsive system of dementia care across Canada.

At a glance

Issue

The number of people with dementia diagnoses in First Nations populations has risen significantly over the past decade, signaling the need for culturally appropriate approaches to dementia care.

Research

Beginning in 2017, a team of researchers, community partners and a Community Advisory Council in Canada successfully adapted the Kimberley Indigenous Cognitive Assessment a culturally safe cognitive assessment tool originally developed in the Kimberley region of Australia.

Funding

Research on the cognitive assessment tool was funded through the Canadian Consortium on Neurodegeneration in Aging (CCNA).