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Following up: COVID showed family caregivers crucial in LTC, says LU researcher

Lakehead professor part of team that surveyed, interviewed essential caregivers on their experience during pandemic.
long-term-care

THUNDER BAY – A Lakehead professor says her research into the experience of family and friends of long-term care residents during the pandemic has reinforced just how essential they are to the health and well-being of those they support.

Kathy Kortes-Miller, a Lakehead social work professor and director of the Centre for Education and Research on Aging and Health (CERAH), is hopeful the work will bolster growing recognition of the crucial role those informal caregivers play – and ensure traumatic lockdown experiences that saw some go months without contact with their loved ones are not repeated.

“I’m hopeful we’ll recognize that an essential care provider needs to be present for every person entering our health care system,” she said. “We need to have that connection, and it’s a very beneficial part of their care. But also, that essential care providers, family and friends, are educable. They are willing to do the things that are required to maintain safety.”

Kortes-Miller’s interest in end-of-life care has stuck with her from an earlier career as a hospice social worker to the 2018 publication of her book Talking About Death Won’t Kill You: The essential guide to end-of-life conversations.

When she saw public interest in the role of caregivers spike as strict measures were imposed in the spring of 2020, she set out to capture their experience firsthand, working with researchers from the University of Ottawa and University of Guelph.

“We started to see the hashtag #NotJustaVisitor become pretty popular on social media, and we’re hearing people being locked out of long-term care and away from the people they usually would care for,” she said.

The research team, which also includes Lakehead graduate students, secured over $24,000 in government funding to support the work in 2020.

Between March 2020 and March 2021, the team collected over 100 responses to a detailed survey from family and friends of long-term care residents across the province, including a number from Northwestern Ontario and Thunder Bay itself.

Researchers also held follow-up interviews with 25 of those people.

The majority of respondents were female – not surprising, since it’s well established women continue to do more informal caregiving, said Kortes-Miller.

Most were caring for parents in LTC, but others helped support spouses, friends, or more distant relatives.

Before COVID, the study found, caregivers would typically visit a couple of times a week, often staying for hours, supporting loved ones with laundry, feeding, socializing, exercising, and ensuring medication is taken properly.

Caregivers also help give staff meaningful insights into the person they’re caring for, she said, particularly when a resident’s ability to communicate and advocate for themselves may be limited.

They can also serve a key advocacy role, in a system that was already struggling to adapt to growing demands before the pandemic.

“People are coming into long-term care with more complex needs,” said Kortes-Miller, and often require more specialized care than in the past. “We used to think of long-term care as what we call retirement living now, where people would go in with more assistive care needs, but they were still more independent."

“But now as Canadians are living longer and arguably better than ever before, people are able to stay in their own homes longer, or in more assisted living.”

LTC residents now have a less than two-year average lifespan after entering the facilities, she said.

Increasingly acute needs, mixed with chronic staff shortages, have made the system more reliant on support from family and friends.

“The reality is that PSWs, there’s not enough of them to provide the care that’s required, so family members step up,” Kortes-Miller said.

There’s been a dawning recognition of that fact, she said, reflected in changing terminology, with close friends and relatives now often deemed “essential care partners” rather than “visitors.”

Many didn’t feel they were treated as essential during the pandemic, however, reporting gaps in communication and policies they felt ultimately harmed residents in the name of pandemic safety.

“People, when they were locked out, got really angry, and they got really worried about their person that they were caring for,” she said. “They were frustrated by the lack of communication from long-term care homes, by the changing information they were receiving… The high level of frustration and anxiety came out loud and clear in our survey.”

Some discussed the burden of knowing loved ones were isolated during their final moments, missing out on chances to make final connections, and properly mourn those who passed.

Others reported seeing residents’ health suffer after weeks or months without contact.

“To see those changes, or to not be recognized again, was really heart-wrenching,” Kortes-Miller said.

In one case, a woman went for five months without seeing her spouse, who was unable to use communications technology due to dementia, and reported a steep physical decline during that time.

“Many people said that COVID wasn’t the scary thing that we thought it was going to be, but not being there for their loved ones was way worse,” said Kortes-Miller. “They thought the COVID protocols in place were focusing only on physical caregiving as opposed to the quality of living.”

Respondents emphasized their frustrations were with a system they believed was underfunded, not the staff providing care, she noted.

“One of the things that really struck me when people were telling their story and talking about how difficult it was for them, they also recognized it wasn’t easy for the staff in long-term care either,” she said. “They wanted people to know that while they didn’t think there were enough PSWs or enough nurses, they were really grateful for those who didn’t leave during COVID when things got really difficult.”

“They just want things to be better in long-term care – they want our government to pay more attention to what’s going on, and be able to support and pay people who work in long-term care better.”

The research team behind the study will produce a paper including policy recommendations on issues like how homes communicate with family and friends, the use of technology, and the involvement of family councils.

Through CERAH, some of the results will be shared publicly, she said, while the team will also look to present it at conferences and submit articles to academic journals.

One resounding result of the study is that essential care providers want to ensure they’re never completely locked out of homes again, she said.

“Essential care providers are more than willing to move with the changes, but they don’t want to be locked out, because they are essential, and their connection with their person really matters,” she said.

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