Dalhousie student documents experiences of Black caregivers struggling to find support

Black Nova Scotians who care for loved ones with dementia at home often struggle to find the support and services they need, says a Dalhousie University researcher who has documented their experiences as part of a new study. 

Mary Lukindo, a fourth-year medical sciences student, spoke with five caregivers to learn how they've coped during the pandemic. Her research is part of a larger study about dementia care led by Dalhousie University and St. Francis Xavier University. 

"What I found was that caregivers felt left to the side and they found themselves more lost than they were before, like the ground was pulled from under them," Lukindo told CBC Radio's Information Morning.

The pandemic revealed the cracks that already exist in Nova Scotia's community-based dementia support system and how this can fail Black caregivers especially, Lukindo said. 

She said caregivers spoke about the importance of caring for their loved ones at home, rather than taking them to a long-term care home.

"The elders ... when they get sick, you don't take them outside, you take care of them in the community, in the homes, because that's where they've always been and that's where they feel safe," Lukindo said. 

But this culture of caring for people in their communities isn't always understood by support workers, she added.

"Sometimes there was that lack of cultural competence by the support agencies coming in, where some of the support workers would question like, 'Why don't you just take them to a long-term care?"' Lukindo said. 

She said her study shows the need for more cultural competency on the part of support agencies and long-term care staff.

Caregivers are emotionally, physically exhausted

Lukindo said researchers tried to track down all of the supports and services they could find for caregivers. They found a patchwork of resources and discovered how frustrating it can be to know where to turn. 

"There isn't like a centralized place where a caregiver could find all this information, and so during COVID, with all the changes, it was even harder because some of the services were cancelled until further notice and the caregivers were just left stranded," she said.

Many of the people she interviewed talked about feeling emotionally and physically drained during the pandemic, and described missing their own appointments so they could care for their loved ones. 

The fear of bringing COVID-19 home meant many caregivers also stopped relying on help from friends and family. 

"They didn't even have time to go outside because they were full time, 24/7, the only person watching out for their loved ones ... so it was really, really draining on them," Lukindo said. 

The larger research project by Dalhousie University and St. FX included about 100 online survey responses and more than 40 interviews with caregivers, people living with dementia and community groups.

Lukindo is now working on a research paper she expects to publish in early 2022. She's also presenting her findings, alongside her adviser, Dr. Barb Hamilton-Hinch, on Thursday at the Alzheimer Society of Nova Scotia's virtual conference.

Lukindo began working on the study last year, expecting it would be a summer project, but she said it's become much more than that.

"This wasn't just a story, it was people's lives," she said. "I would hang up the phone and I'd go back to, you know, my school stuff or anything, but people are still living these realities today."

For more stories about the experiences of Black Canadians — from anti-Black racism to success stories within the Black community — check out Being Black in Canada, a CBC project Black Canadians can be proud of. You can read more stories here.