Learning how Aboriginal culture affects dementia care
When Kristen Jacklin began investigating Aboriginal perceptions of dementia, she didn't anticipate finding a balm for her personal anguish.
The Laurentian University medical anthropologist's goal was to better understand the role of culture in diagnosis and care. The plan was to help non-Aboriginal health professionals work in more culturally appropriate ways with Aboriginal communities caring for those with dementia.
Her research - funded by the Alzheimer Society Research Program - is still designed to achieve this. But Jacklin's new understanding of why many Aboriginal people view dementia not as a disease, but as a natural progression, has given her another way to view her uncle's Alzheimer's disease.
"It's been an amazing gift to me," says Jacklin, who is not Aboriginal.
While Aboriginal communities are culturally diverse, Jacklin found many share views about where dementia fits in on the medicine wheel. The wheel represents the natural world, including our place in it, showing how everything is interconnected.
When a person is born, as Jacklin learned during her research, they enter through the eastern doorway of the medicine wheel. They travel around the circle as they age, moving back toward the eastern door.
"As they get closer to the eastern door, they get closer to the spiritual world again," says Jacklin. "It's expected people will behave differently and see and talk to those we can't see. So these behaviours aren't as upsetting."
Teaming up with communities
Jacklin launched her three-year study of six different Aboriginal communities in Ontario after a couple First Nations health centres on Manitoulin Island invited her to a roundtable on dementia.
Aboriginal health care providers on the island recognized they were seeing more cases of dementia and were looking for insight into how to manage them.
Manitoulin Island's First Nations communities would later team up with Jacklin on her research. Six other Aboriginal communities - including The Six Nations of the Grand River and Moose Cree First Nation on James Bay - also worked with her collecting and analyzing information.
Based on a series of interviews with those with dementia, their family caregivers and elders without dementia, Jacklin and her team discovered dementia care is a community effort.
"Neighbours and friends will look out for people with dementia because they know what is going on," says Jacklin. "And Aboriginal people usually care for those with dementia in their own homes all the way to the end. Even in places with nursing homes."
She also discovered that Aboriginal people feel dementia is a relatively new occurrence in their communities.
"Everyone told us this wasn't a problem even five years ago," says Jacklin. "Whether that's because it was traditionally more accepted and people didn't identify it as dementia, or whether it truly didn't exist, we don't know."
Last Updated: 06/20/14