As long-term care home outbreaks continue to claim the lives of Canadians at disproportionate rates during the COVID-19 pandemic, experts are also raising concerns about the number of those trying to cope with dementia on their own.

“Most people understand the need for safety, the need for caution, particularly, again, with this vulnerable group. However, the fallout is really profound,” says Wendy Schettler, CEO for Alzheimer's Society of Manitoba. (Wayne Glowacki / Winnipeg Free Press files)</p>

“Most people understand the need for safety, the need for caution, particularly, again, with this vulnerable group. However, the fallout is really profound,” says Wendy Schettler, CEO for Alzheimer's Society of Manitoba. (Wayne Glowacki / Winnipeg Free Press files)

"A great concern is, many older people with dementia are at home," says Dr. Howard Bergman, a Montreal-based family doctor and geriatrician who is a professor at McGill University’s faculty of medicine. Although they may avoid the risks associated with contracting COVID-19 in communal living arrangements, many people with dementia share the same risk factors as care-home residents, especially if they’re elderly and have other chronic conditions. And isolation has detrimental effects on their health.

"I’m concerned about that group that is much more hidden or invisible compared to the group that is in long-term care where we see them, and where things are carefully — now — counted and looked at," Bergman said.

"There’s a whole series of social, psychological and medical impacts that go beyond, did they get the virus or not?"

Elderly, people with dementia may not present typical COVID symptoms

Manitoba's chief medical examiner receives an average of eight calls each day from personal care homes across the province to investigate residents' deaths.

Manitoba's chief medical examiner receives an average of eight calls each day from personal care homes across the province to investigate residents' deaths.

All deaths of personal-care home residents have to be reported to the office of Manitoba's chief medical examiner, which investigates all COVID-19-related fatalities, a justice department spokesperson wrote in a statement, and is supposed to consider the circumstances, cause and manner of death. Generally, autopsies aren't ordered because there's enough documentation about the cause of death without performing an autopsy, the department stated.

But researchers are learning the elderly or those with severe dementia may not have typical symptoms of COVID-19. Some research from the U.S. and U.K. has suggested the virus presents differently — showing up more like functional decline and less like a fever and respiratory problems — in people who may already be frail.

That's generally true for a number of different diseases, says Dr. Paula Rochon, a scientist at Toronto's Women's College Hospital who has spent decades studying the health of older adults.

"One thing about older adults is when they get infections, they often present in what we might call an atypical way, not the usual way that you might see things," she said. "It'll be things like, they might become (more) confused or... a little bit drowsy, their appetite might not be the same, and sometimes they're just a little bit unsteady or sometimes you might see somebody starting to fall. The interesting thing is that often, this is a change from the way they were and it's the people that are around them, like a caregiver who sees them on a daily basis or a family member, that are in the best position to notice."

People who have dementia often can't express their symptoms, which can lead to a lack of clarity for their loved ones about what is happening.

"You're really relying on people who know them to notice that there's something different with them," Rochon said.

Whether or not someone with dementia tests positive for COVID-19, the "unintended consequences" of the virus are also causing rapid cognitive decline, Rochon said. When dementia patients can't walk around much and are forced to spend more time in their rooms without social stimulation, they can get more agitated, which sometimes causes other problems. People are also less likely to exercise when they're alone, Rochon said, adding that research on the health effects of loneliness is still evolving.

"There's this group of people who develop the infection, but I think we also have to think about the unintended consequences and how that impacts people as well, because that's a very important piece and one that we need to continue to understand better so that we can intervene."

Roughly 23,000 Manitobans have dementia and one-third of them live in long-term care facilities, according to the Alzheimer Society of Manitoba. CEO Wendy Schettler says staff there have been working with many "terrified" families who are making tough decisions about whether to rely on long-term care as resident death counts continue to climb in the province. As of Monday, 18 people have died at the site of Manitoba’s largest personal care home outbreak. More than 100 residents and staff have been infected at Parkview Place since last month. Yet it’s been harder to keep people with dementia at home during the pandemic, considering in-person day programs were cancelled and support networks for caregivers have shrunk, Schettler says.

"We talk to families who are desperately holding on because they don’t feel that placing their family member (in long-term care) is an option, and we also talk to families where we know they absolutely cannot care for their family member at home anymore and are desperately worried that they’ve had to place their family member," she says.

Whether at home or in care, social connection is vitally important for people with dementia — many of whom can’t communicate via virtual technology and need visits, if not from family, then from staff.

"It helps them stay present, it helps them use the skills they have while they have them," Schettler says, saying she hopes a better-funded, adequately staffed dementia-care system emerges from this crisis.

"Most people understand the need for safety, the need for caution, particularly, again, with this vulnerable group. However, the fallout is really profound."

Bergman agrees. Last year, he chaired an expert panel on dementia care in Canada that guided the federal government’s national dementia strategy — a plan that was released mere months before the pandemic began and hasn’t been fully implemented. A plan for its implementation needs to happen sooner than later, Bergman said.

"That’s what I don’t see. That’s what I would like to see," he said.

Heading into the second wave of the virus’s spread, he says there are many lessons provincial health systems need to learn about how to care for dementia patients and how to stop deadly outbreaks in long-term care homes.

In the meantime, people living with dementia and their families should do what they can to make sure they have ready access to a family doctor and follow public-health guidelines and physical distancing vigilantly. For those living in long-term care, families and advocates "have to be as active as possible" in communicating with staff, Bergman says.

"I think persons with dementia... and (their) families have to be part of this public debate," he says

katie.may@freepress.mb.ca

Twitter: @thatkatiemay

Katie May

Katie May
Justice reporter

Katie May reports on courts, crime and justice for the Free Press.

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