Advocates demand family caregivers be given access to long-term care homes

Long-term care residents died of neglect: military CEO of CanAge, Laura Tablyn Watts discusses reports saying dozens of residents at two Toronto long-term care homes died of dehydration.

TORONTO — Advocacy groups and geriatric care specialists across Canada are calling on federal and provincial governments to allow family caregivers back into long-term care homes where their regular care should be deemed an essential service.

After months of lockdowns, residents who have avoided contracting COVID-19 are still experiencing the toll of the pandemic, experts say, including profound isolation that can result in irreversible physical and cognitive declines.

Those concerns are even higher for an estimated 80 per cent of long-term care residents who suffer from some form of dementia.

But severe staffing shortages and restrictions on visitors have also led to serious allegations of improper care.

“There have been a lot of very troubling reports from families,” Dr. Vivian Stamatopoulos, associate teaching professor at Ontario Tech University who specializes in family caregiving, told CTVNews.ca by phone Monday.

Stamatopoulos has been contacted by dozens of people who have shared tragic stories of family members who are “drastically fading.” Among the more serious concerns are allegations of residents suffering dehydration, being left in soiled diapers for days and even the use of sedation to “pacify” residents.

Earlier this month, it was reported that an Ontario man died in a long-term care home in the Greater Toronto Area due to exhaustion from malnutrition -- a death Stamatopoulos and other advocates say may have been prevented if a family caregiver had the chance to intervene.

“We don’t want these petty outdoor visits which do nothing to work against the very dangerous harms of isolation among the elderly,” said Stamatopoulos, who noted family caregivers often feed, wash or bathe residents.

“Any myth that families ship off their loved ones to these homes to die in isolation is incorrect. Their continued involvement in long-term care will help keep residents alive. There is no question about that.”

FAMILY CAREGIVERS SHOULD BE ON FRONTLINES IF ‘WILLING AND ABLE’

Nathan Stall, geriatric physician at Mount Sinai Hospital, says family caregivers not only play an essential role in the health system, their direct involvement in care reduces mortality.

“[Long-term care homes] treat visitors as this luxury -- a nice thing to have rather than a necessity,” Stall told CTVNews.ca by phone Monday.

“Family caregivers are essential care partners. Many of them provide direct care to their loved ones who are in a retirement or nursing home, and would be just as capable learning infection prevention and control measures or learning how to properly don and doff PPE.”

Stall, whose own grandmother is a retirement home resident, says these essential caregivers should be given the ability to provide hands-on care if they are willing and able to, pandemic or not, noting that in Quebec and Ontario the military were brought in to assist with tasks normally provided by family caregivers.

“The metrics that we’re using to guide the decisions about letting visitors in are guided only by the COVID-19 caseloads and deaths. But we are not capturing the collateral damage that is occurring as a result of lockdown,” he said, noting there is no data on deaths unrelated to COVID-19.

“People are dying of other conditions that are related to the lockdown but not to COVID-19 itself. We need to be capturing those metrics as well when we are thinking about that risk balance of is it worth keeping people in lockdown.”

Each province has handled the crisis differently. Quebec, for example, said caregivers would be able to visit long-term care facilities during active COVID-19 outbreaks, but on a case-by-case basis and depending on region.

Alberta and British Columbia have made similar declarations. However, many caregivers still reported being banned from entering the homes.

More provinces are now allowing visitors at long-term care homes, but those visits are largely restricted to outdoor, physically distanced interactions that experts say are highly restrictive.

CanAge, Canada's national seniors’ advocacy organization, is now lobbying the federal and provincial governments to develop an essential caregivers program that would deem family caregivers essential.

“We didn’t have a good strategy for how to have a maintained lockdown situation and we should have. And we’re going to need one, because COVID-19 is going to be with us for 18 to 24 months and maybe on an ongoing basis,” CanAge CEO Laura Tamblyn Watts told CTVNews.ca by phone Tuesday.

“We have been talking to governments across the country advocating for this and helping to develop this type of programming.”

That framework may include granting essential family caregivers with the credentials and training they need to provide care safely on the frontlines and outlining different requirements for testing and vaccination protocols.

The organization is set to release a national seniors’ platform at the end of the month that will include suggestions about how that framework might be implemented.

“This is differentiating between the nice visit from your niece for a cup of tea and a quick catch-up and instead acknowledging that the daughter that comes in twice a day is really providing hands on home care, bathing, feeding, et cetera,” Tamblyn Watts said.

“They’re not just a visitor. They’re an essential part of the care team and that is something we need to develop quickly and institute on an ongoing basis so this doesn’t happen again.”