Indigenous female caregivers' experiences for a loved one with memory loss

In this video presentation, researcher Dr. Danielle Alcock, member of the Chippewas of Rama First Nation, talks about storytelling in the lives of female Indigenous caregivers supporting a loved one with memory loss.

Dr. Danielle Alcock, University of Western Ontario
Dr. Danielle Alcock, University of Western Ontario

Over a period of some seven years, Dr. Danielle Alcock focused on Indigenous experiences of dementia in both her master's-level and doctoral-level research.

This research—like many graduate studies—involved reading and citing hundreds of texts, deeply networking in the field, and doing extensive interviews with study participants.

And this particular research was informed by her own experiences, too.

"Coming from a First Nations family, it was difficult to navigate the healthcare system dealing with jurisdictional barriers, stigma and a lack of resources," Dr. Alcock has said. "As a caregiver, there are no existing supports for alcohol-related dementia that are culturally safe."

Intensive study

In 2014, Dr. Alcock wrote her master's thesis, "'Write My Story Before I Forget': An Auto-Ethnography Of Aboriginal Alcohol Dementia" at the University of Western Ontario. Her doctoral work there began soon after.

In 2017, the Alzheimer Society Research Program supported Dr. Alcock's important doctoral work with a $66,000 grant. That supported the completion of her 2019 doctoral thesis, "'I Honoured Him Until the End': Storytelling of Indigenous Female Caregivers and Care Providers Focused on Alzheimer's Disease and Other Dementias (ADOD)."

More recently, in March 2021, Dr. Alcock shared about her own story and her research findings in an Alzheimer Society Research Program webinar. The webinar is viewable above.

The power of story

"All of the caregivers including myself are advocates and many of us enact change through sharing our stories," Dr. Alcock explains at the end of her doctoral thesis.

This use of storytelling for change also comes through in Dr. Alcock's presentation. In it, she examines obstacles to accessing care—including racism, continuity of care issues and jurisdictional barriers.

For instance, Dr. Alcock’s presentation cites a House of Commons paper indicating that “while there are currently over 630 First Nation communities in Canada, very few First Nation communities have their own long-term care facilities. According to information provided by ISC, only 53 long-term care facilities are managed by First Nations across the country.”

A wider impact

Among the key findings of Dr. Alcock's research are that "cultural safety needs to be institutionalized into healthcare practices to remove systemic barriers of racism, discrimination and underutilization of services."

She also notes in her key findings that "holistic health and removing siloed healthcare is not only beneficial for Indigenous families impacted by dementia, but newcomers to Canada and rural populations."

To find out more about Dr. Alcock's research and recommendations, view the presentation video above or on our YouTube channel. Or read her master's thesis and doctoral thesis on the Western Libraries website.