Dementia Research That’s Rooted in Cultural Connection and Community

Oct 18, 2022
Shining The Spotlight Issue11 WEBSITE DEMENTIA 07

NWAC’s collective goal of enhancing the lives of Indigenous women, girls, transgender, and gender-diverse people extends to all stages of life. One of the ways we meet this commitment is through our work in the area of dementia research.

The bulk of our research work has revolved around two multi-year projects funded by the Public Health Agency of Canada. These projects are “Stigma: An Exploration of Lived Experiences, Understandings and Behaviours of Dementia within Indigenous Communities” and “Supporting a Circle of Care: A Culturally-Informed Support Group and Toolkit for Indigenous Caregivers of People Living with Dementia.” These projects seek to find evidenced-based and culturally relevant ways of improving the mental, emotional, and physical well-being of Indigenous people living with dementia and their caregivers.

To date, NWAC has produced several resources grounded in Indigenous methodologies and ways of knowing. These resources include a toolkit Addressing Dementia Related Stigma with Indigenous Specific Strategies.

Extensive consultation with Elders, Indigenous women, and gender-diverse people has revealed the ways that cultural understandings of dementia can contribute to reducing stigma. For instance, as highly respected members of their communities, older Indigenous adults are recognized for their ability to contribute to traditional roles, such as passing on their knowledge and life experiences. Reducing stigma not only increases people’s likelihood of seeking care and support, but significantly lowers the risk for abuse and neglect. We shared these findings through a recent Dementia Awareness Campaign, which ran online for several weeks in September.

As a result of the racism, sexism, and discrimination many Indigenous people living with dementia experience when accessing health care, NWAC remains committed to developing culturally safe and trauma-informed resources.

We are currently working on a toolkit that addresses the needs of Indigenous caregivers of loved ones with dementia. This toolkit will feature prominently in future engagement sessions, which will seek to expand the capacity of Indigenous caregivers to care for their loved ones by enhancing their understanding of dementia and improving their ability to manage the evolving and ongoing progression of the disease.

When caregivers struggle physically and mentally, the level of care that people living with dementia receive is compromised.

Mitigating the stress and burden felt by Indigenous caregivers is crucial to improving the care their loved ones receive. To this end, NWAC’s dementia research will continue to explore ways of improving access to caregiver supports that are rooted in cultural connection and community; that reduce social isolation and burnout; and that increase knowledge and awareness about dementia among Indigenous communities.