Study wants to hear from family, friends caring for loved ones at home

Shirley Renouf of Florenceville knows what it's like to care for a loved one who wants to remain in their own home. She and her sister supported their mother, who suffered from dementia, for years after their father died.

She says co-ordinating the schedule of home-care workers, and filling in the remaining gaps was, at times, a full-time job.

"It is very consuming on a lot of different levels."

A new study launched by eVisitNB hopes to learn from people like Renouf, about what virtual supports could help family, friends and neighbours who are doing the unpaid work that allows people to stay in their own homes.

The New Brunswick-based virtual health-care clinic, which operates outside the Medicare system, is calling on all "informal caregivers" to participate in the study by completing an online survey.

Registered nurse Amy McLeod is leading the project. She said the work of caring for a loved one can be very lonely for informal caregivers whom she considers the backbone of our health-care system.

"It's those people that come over to help people when they have physical needs, or if they need help with running errands," she said.

"We know that for people that are doing it, it comes with many challenges. We know that research has shown that there's a lot of stress that is associated with it."

Open conversations about aging

Renouf's mother, Gloria Drost, died on May 1, 2020 — one day after her 89th birthday. By that time, her health had dramatically declined, and she had been moved to a nursing home.

Even though Renouf's younger sister worked alongside her to care for their mother, and even though Renouf is a retired nurse, there were still moments where she wished for improved support.

"I felt that if her primary-care provider was more in tune with what was happening to her, with what we were seeing, that he could have better assisted us in managing her care," she said. 

She remembers worrying when her mother lost about 60 pounds in a span of 18 months, and not feeling like those concerns were taken seriously by the doctor. 

"He didn't say it was dementia, he didn't say it was a tumorous growth. He just said, 'Well, if you're losing weight have another doughnut when you go to Tim Hortons.'"

Renouf would have preferred a more open conversation about what was coming next for her mother, and advice on finding a nursing home, rather than a refusal to acknowledge the downward trend her mother was on.

"There's just such a denial about aging and infirmity that a lot of people won't have that conversation," she said. "When you get old where do you want to be? How do you want to be looked after?"

At 71, she isn't completely comfortable using technology to access care, but her children's generation will be, and she hopes they will feel supported if they ever need to care for her.

"Whether it's virtual appointments or daily virtual visits," she said, "They will get greater value of it than someone my age."

McLeod said the suggestions and experiences of caregivers like Renouf will inform her team at eVisitNB as they look for ways to help people remain independent as long as possible.

"That's what the the aging baby boomers are wanting and demanding — they want to stay in their own home. They want to be supported. They want to be able to have access to the health care that they need."

She says the results of the survey will be shared on the eVisitNB website. McLeod expects the research will show many caregivers want easier access to primary-care providers and help to navigate government programs.

"I think that connection is the central word. There's all kinds of wonderful services available but how do we connect to people so that they know about it?" 

The online survey will be available to all informal caregivers in New Brunswick until the end of June. McLeod is also conducting 20 in-depth interviews to supplement the survey data.