Project aims to gain information about how to care for caregivers in Nova Scotia

A new project, launched this month, aims to shed light on the needs of family members and friends who care for people with disabilities, whether the elderly with dementia or younger people with other problems, and those who work with them.

dr Janice Keefe, a professor at Mount Saint Vincent and director of the university’s Nova Scotia Center on Aging, says the strategic review of family/friend care will address understanding the experiences and needs of family and friend caregivers.

“So what’s happening right now? What’s their current reality? The kind of good, bad, and imagining what it takes to support them,” Keefe said in an interview this week.

MSVU’s Center on Aging works in partnership with Caregivers Nova Scotia on the project, which is funded by the Nova Scotia Department of Seniors and Long-term Care. The support for Caregivers Nova Scotia is part of the department’s support for 12 innovative projects in the field of older people and helping them stay in their homes, Keefe said.

focus groups and survey

The project has several ways to obtain information, including an online survey and a series of focus groups with caregivers in communities across Nova Scotia.

“We have a total of 25 focus groups,” Keefe said. “We look at family members and friends who are caring for someone – an elderly person because of a physical or mental disability or a chronic illness etc. – but we also look at carers who are parents looking after a child or an adult with special needs.”

In each community there will be a focus group in the morning focused on carers of younger people and another either in the afternoon or evening with carers of older people.

Three of the focus groups are already planned, including one in Halifax, one in Dartmouth and one in Yarmouth. Those wishing to participate can register online at www.nscaregivingproject.ca. Since not everyone is tech savvy, there’s also a toll-free number 1-877-302-4440.

“We have five more (focus group locations) planned — Kentville, Truro, Amherst, Antigonish, Sydney — so we’re going everywhere,” Keefe said.

“The other thing we want to do is hear from people from specific communities, so someone who is caring for someone with dementia, or someone in long-term care, … a focus group with African Nova Scotians, LGBTQ community, newcomers in Canada – we will have a separate focus group for them – with indigenous peoples as well as Acadian and French speakers.”

For those who prefer to take the survey, it will go live on the website on October 24th. The survey will also be available by phone to request a paper copy when people are more comfortable with this method.

“We… obviously try to make it as accessible and easy for people as possible,” Keefe said. “We also have a survey for the people who work with family and friends who are carers, so that’s another kind of part of the project.”

Important support in the community

Data from Statistics Canada’s 2018 General Social Survey shows that 28 percent of Nova Scotians are unpaid caregivers, who spend 221 million hours providing care each year, according to a publication about the survey.

“The thing is, caregivers are really the backbone of our ongoing care system in the community, whether they’re caring for the elderly or younger children with disabilities, they’re helping them stay in the community for as long as possible,” Keefe said .

“And it doesn’t stop when someone goes into long-term care. There are caregivers who continue to take care of the important activities of daily living with the residents.”

Keefe said families and friends provide 80 percent of what is needed in the community, so without them the system would be truly bankrupt.

“So if we can help support them, if we can help figure out what their needs are, what would help them in what they’re doing, then I think it’s a win-win.”

The aim is to support caregivers and find ways to inform decision makers.

Keefe said preliminary results could be available in the new year.

“It’s a great opportunity for caregivers to get their message and needs out there so we can better support them,” she said.