$24M research project looks to improve care for Indigenous people with dementia

When Elizabeth Edgar-Webkamigad's mother first showed signs of dementia, it was a long and difficult process to get a diagnosis.

"It was right smack in the middle of COVID," said Edgar-Webkamigad, who lives in Sault Ste. Marie, Ont. 

Because her mom started to show signs of dementia in the middle of a global pandemic, it took time just to get an appointment with a family doctor.

But to get a brain health assessment, Edgar-Webkamigad's mother had to be referred to a geriatrician.

"It took almost a year to get that actually happening," she said.

Even after her mother's diagnosis, her care didn't always recognize her culture and the trauma she experienced attending the Spanish Indian Residential School for Girls. 

A doctor told Edgar-Webkamigad her mom was lashing out when a personal support worker tried to bathe her.

"I can tell you in most of my life, I saw my mom bathe maybe a handful of times," she said.

That was because her mother had traumatic experiences in residential school, and later a tuberculosis hospital (although she was never diagnosed with the disease) while bathing.

"For her, bathing time was not a sacred time," Edgar-Webkamigad said. 

"It was a time where violence was introduced. It was a time where body shaming happened. It was a time where abuse happened."

Because of those experiences she had sponge baths for most of her life.

Edgar-Webkamigad said the health-care system should do better at recognizing Indigenous traditions and medicines.

She mentioned that in her part of northeastern Ontario, for example, there's a plant-based medicine that has a calming effect and has been used for generations to help people with dementia.

Creating care 'bundles'

Now Edgar-Webkamigad is sharing her family's experiences with a $24-million research project that spans seven universities across Canada along with several Indigenous organizations, such as the Maamwesying North Shore Community Health Services and the Métis Nation of Alberta.

The Indigenous Brain Health Assessment Bundle Project has received funding from the New Frontiers in Research Fund to create bundles, which are region-specific resources for health-care providers to deliver culturally appropriate care for people who are showing signs of dementia.

Sharlene Webkamigad, Edgar-Webkamigad's niece, is a researcher at Laurentian University who is involved in the project.

She's been meeting with people like her aunt to hear their stories and help find better ways for the health system to care for their loved ones.

"I've been hearing about the importance of healthcare professionals having knowledge of those more culturally specific ways of approaching somebody who has dementia, including the care for them within long term care facilities," Webkamigad said.

The research project will span six years.

"My biggest hope is to create space and opportunity … to put everything that we can on the table to help bridge communication, to help bridge understanding, to help bridge and build what I would say is probably going to help the most: the connections," Edgar-Webkamigad said.