Seniors, fearful of long-term care homes and COVID-19, seek new ways to live together

Well before the pandemic, Jack Brondwin would recoil hearing stories about the institutions where many seniors spend their final years. He recalled his mother’s elderly acquaintance who was told she couldn’t eat with her friends in the dining hall of their long-term care home because tables were strictly prearranged.

“I’m a baby boomer and I’ve always been independent,” said Mr. Brondwin, 75. “In seniors’ residences, there’s a lot of restrictions. I don’t feel I’m ready for that kind of a life.”

During the first wave of the pandemic, as tragedies unfolded at numerous long-term care homes – with people neglected, unfed and isolated inside tiny rooms away from family and friends for months – Mr. Brondwin grew resolute. “These institutions failed seniors and failed them really badly,” he said. “I would resist going into an institution for as long as I can.”

Mr. Brondwin’s resistance was undergirded by a plan – a community of his own in which to age with dignity. In March, 2021, the alternative housing model he’d dreamed up six years earlier opened its doors in Vancouver. Today, Little Mountain Cohousing hosts 49 residents ranging in years from newborn to 80, from Gen-Xers with kids, to singles, new retirees and seniors. Though residents have their own individual apartments, the design of the place draws them together, be it weekly shared dinners in a communal kitchen or gatherings on a rooftop patio. The idea behind co-housing is interdependence: having your own life, but knowing, helping and even liking your neighbours.

“We’re actually going backwards in time,” Mr. Brondwin said. “Co-housing is reverting back to the model we used to have, where our elders were supported within the family, within community.”

The pandemic forced more boomers and seniors to take a hard look at the next decades of their lives, prompting difficult conversations about their hopes – as well as the limitations and realities – of aging and dying with dignity outside of traditional institutional settings.

A Globe and Mail survey of 577 Canadians found 67 per cent said the disturbing neglect they witnessed in care homes during the pandemic made them reject the idea of going into such institutions in their older age.

Baby boomers’ resistance to seniors’ homes is colliding with stark demographic realities. Canada’s aging population just hit a historic high, with more people nearing retirement than ever before, according to census data released late last month by Statistics Canada. Nearly one in five Canadians is now 65 and older, their numbers rising by more than 18 per cent between 2016 and 2021 to seven million people. Seniors age 85 and older doubled their ranks between 2001 and 2021 to 861,000 people.

Gerontologists and elder-care advocates are pushing for more varied and affordable housing options for the country’s aging population. They warn of severe pressure on the understaffed home-care sector, as well as on women, who often serve as informal, unpaid caregivers. After decades of agitating for large-scale reform in long-term care, with governments chronically underfunding a system now facing acute shortages of properly paid and trained staff, experts are pressing for more innovative housing models for seniors.

“We cannot replace long-term care: that’s a fundamental reality. It’s a high level of 24/7 nursing care,” said Habib Chaudhury, chair and professor in the department of gerontology at Simon Fraser University. “But connected to that issue is, what other alternative forms of care can we provide that are more community based?”

Canadian seniors are increasingly demanding better-quality home care, hoping to age in place in a familiar setting. Other alternatives growing in popularity include co-housing and home sharing with friends, students or other likeminded strangers helping each other and splitting the cost of a home. Multigenerational living, long espoused by some cultures, is also becoming more commonplace after the pandemic, with families deciding they want their elders close, not alienated in institutions. Others want to see more supportive housing for seniors with disabilities, models that offer on-site personal care while prioritizing people’s independence.

Among those who reside in and study alternative housing arrangements, there are early signs these environments are good for people, curbing isolation and keeping seniors more happy, active and engaged than do institutional settings.

Still, despite the proliferation of such alternatives, gerontologists offer a sobering reality check: long-term care will always be necessary for the many Canadians who develop severe dementia and other serious health issues that require 24-hour attention. Last year, more than a quarter of Canadians 85 and older lived in seniors’ residences, nursing care or long-term care, with numbers expected to swell as the country’s population ages, according to Statistics Canada. Given this demographic portrait, many questions remain about whether people really can grow old in newer, experimental environments outside of institutional care.

“We obviously need long-term care. We can do a lot to change the design, environment and models of staffing to improve the quality, but I don’t think we can ever replace it,” said Lori Weeks, a professor at Dalhousie University’s school of nursing, who researches innovations in care and housing for older people.

“But if we have more extensive, community-based supports and assistive housing, we have evidence that those environments can delay the need and possibly prevent some people from having to use long-term care,” Dr. Weeks said. “We need all of the options available.”

In Winnipeg, Beverly Suek, 76, rode out the pandemic with her roommates, five women in their 50s, 60s and 70s. They cooked for anyone who fell ill and needed to isolate in her room and commiserated about missing children and grandchildren during lockdowns.

“Loneliness is a problem for older adults anyway but the pandemic just made it horrific,” Ms. Suek said. “We didn’t go out much – we were really cautious – but we had each other. We had a pajama party and we would exercise together.”

Ms. Suek’s arrangement is called home sharing. Though each woman has her own room, the six share common space and split the mortgage. The arrangement brings inevitable comparisons to The Golden Girls: “We want likeminded people who share the same values,” Ms. Suek said.

The roommates said they plan to take care of each other in older age and they’ve had some early practice. When resident Lynda Trono, 63, sprained her ankle last summer, Ms. Suek made her suppers. Ms. Suek’s roommates returned the favour after a knee operation: “We had a picnic up in her bedroom,” said Ms. Trono, a United Church of Canada minister.

Thinking about the future, they’ve replaced most of the home’s round knobs with levers for the benefit of arthritic hands. They’re working toward making the home wheelchair accessible and plan to offer rooms on the ground floor to those who need them most. “If two of us need a help from a nurse, we can afford to pool our money and hire somebody ourselves. If we need a chairlift, we will do that,” said Ms. Suek, who wrote a handbook on home sharing.

Still, questions remain about aging here.

“The intention is to take care of people as long as we possibly can – even have them die here – and involve families,” Ms. Suek said. “But you have to balance that with the practicalities of how much energy we would have. Our plan is to do this, but how it will work out, we don’t really know.”

Many other Canadians are hoping to avoid institutionalized aging by joining forces with their grown kids, with multigenerational living the norm in many cultures.

Though just 6 per cent of Canadians lived in multigenerational households in 2016, some cultural groups chose the arrangement in far greater numbers than others, according to a May, 2021, report from Statistics Canada. More than half of seniors with Punjabi, Tamil or Urdu mother tongues and nearly 40 per cent of seniors whose first language was Mandarin, Tagalog, Gujarati, Hindi and Vietnamese lived in multigenerational households. Compare that with French-speaking seniors: less than 2 per cent lived in intergenerational homes.

By contrast, just 3 per cent of Punjabi or Gujarati speaking seniors lived in nursing homes or seniors’ residences, citing income, personal preference or the ability to speak an official language, among other factors.

Seven people live at Ghulam Hasnain’s Brampton, Ont., home: Mr. Hasnain, his wife, their two children, her father, 75, mother, 66, and brother, 29. After arriving from Pakistan, his wife’s parents moved into their separate basement suite in 2017.

“Culturally, we just don’t tend to put parents in old age homes,” said Mr. Hasnain, a 46-year-old accountant. “Parents have been taking care of you when you’re a kid, so you do the same – return the favour.”

During pandemic lockdowns, Mr. Hasnain and his family took in the news about seniors being isolated and neglected in long-term care homes: “It felt like they were in prison,” he said.

Home together throughout the crisis, the family experienced relief. Mr. Hasnain and his wife felt comforted that they could keep an eye on her parents; the aging father has diabetes and a heart condition. The couple ferried him to his doctors’ appointment and did the groceries. On evenings when they ran errands, the elders watched their young children.

Eventually, the plan is for the aging parents to move in with their 29-year-old son, once he has a home of his own. Mr. Hasnain observed that although the young man feels some stress about this, there is also a deep sense of filial obligation. Governments should do more to support Canadians who take care of elders at home, Mr. Hasnain said: “It’s very important that the government makes it easier for more people to be in the caregiving field.”

There are limits to what families can do for their elders at home, especially when serious physical decline or dementia are involved, Dr. Chaudhury said. Without good home care – staff trained in medical and personal care – multigenerational living becomes challenging to sustain long term. Dr. Chaudhury also urged more government funding for seniors’ transportation and housekeeping, as well as more multigenerational housing infrastructure.

Others are looking for the privacy and help of supportive housing – accessible apartment buildings with full-time, on-site personal care.

After contracting long COVID, Elaine McCartney, 66, is now routinely fatigued and 80 per cent bedbound, needing a wheelchair or walker when she goes out. Her two-storey townhouse in Guelph, Ont., no longer works for her. Her husband, who is 70 and suffers from chronic obstructive pulmonary disease, has experienced caregiving burnout.

Looking to the future, Ms. McCartney, a retired social worker, said the best scenario would be subsidized supportive housing: “I would have my independence as well as the assurance that I could call someone if I needed assistance.”

Though Ms. McCartney is on a waitlist, she isn’t hopeful. There are fewer than 30 accessible apartment units with supportive care in Guelph, she has found. “My chances of getting something, I’ll be very old by the time that happens,” she said.

“We need more subsidized housing that is adapted for the disabled and the elderly so we can maintain our independence and dignity for as long as possible. We need seniors to be as visible as possible, rather than locked away in warehouses to die.”

Many seniors who pursue alternative housing seek a level of autonomy not typically found in most institutional settings, particularly in an acute crisis like the the pandemic. At co-housing communities, for instance, everything is decided on by residents: “It’s like an opposite extreme of long-term care,” Dr. Weeks said.

At Little Mountain Cohousing in Vancouver, founded by Mr. Brondwin, there’s a grassy courtyard where children play and a rooftop patio lined with garden boxes where neighbours had socially distanced drinks during the pandemic. On every floor, there are communal rooms devoted to reading, knitting and games. The heart of the building is a large kitchen where neighbours prepare and share meals three times a week. They have their own Slack channel for social events, although residents will also spontaneously invite each other for lunch, as Mr. Brondwin’s neighbour did earlier this month.

The septuagenarian is hopeful about aging in this place with the support of these people. He pointed to neighbours cooking for those isolating after contracting COVID-19 and to the grocery errands he runs for a less mobile neighbour. “It’s what you expect from your family, but these are people living in the same complex who have such a strong feeling for each other,” he said.

Pulling together years of research on co-housing around the world, Dr. Weeks found positive signs for seniors living in such buildings. Danish, Swedish and American studies found neighbours exchanged support during crises, illnesses and difficult moments in life. Neighbours also motivated each other to eat healthy and exercise. A 2013 German study found co-housing residents 50 and older were substantially healthier than others their age. Many felt they were pioneering a new way of living for the older years.

With Vancouver’s Little Mountain community still in its infancy, it remains unclear how the concept will work when more residents decline further with age. Though Mr. Brondwin has floated the idea of splitting the cost of a paid, live-in caregiver, and the building is fully accessible with elevators and automatic doors, planning for realities such as dementia is still nascent. “Eventually, this is something that will have to be dealt with,” he said. “I’m not sure if we’ll get to it before a crisis happens, or whether we’ll have to get to it because a crisis happens.”

In Canada, there is still little evidence to connect co-housing to better health outcomes for seniors, mostly because they have not lived in such communities long enough, according to Catherine Bigonnesse, a gerontologist who studies healthy aging and aging-in-place.

“Everybody ages differently and it’s not one-size-fits-all. And there are clearly limits to what you can ask from your neighbours,” said Dr. Bigonnesse, an assistant professor at the University of New Brunswick. “For now, we can extrapolate that if you’re more socially connected, you’ve got human interaction daily, you’re active in tasks around the community, you garden, you walk – all those things have been documented to increase health, mental health and prevent decline related to aging.”

In Montreal, Janet Torge runs intensive, day-long workshops on the nuts and bolts of alternative housing models for seniors – and the importance of planning ahead.

“I ask them, ‘Okay, so you don’t want to move into a traditional residence. What would you like?’ ” said Ms. Torge, 75. “And we go through all the options that are out there. We talk about care, rental versus owning, and how you talk to your family about what you want.”

Ms. Torge believes the current thinking about aging is limited. Not everyone will require 24-hour medical attention in long-term care, she said, even as seniors need much help beyond the medical.

“When we talk about care for seniors, I want to expand the definition of care. When they put us into a residence, every senior is just a body with health problems. It’s so much more complex than that,” Ms. Torge said. “We could use more long-term care but mostly, we need affordable, non-institutional care for the last chapter of our lives.”

Seniors who attend her workshops stress they want to live among “young energy” and people who share common goals. One group envisioned a communal home where older artists mentor younger ones. Another group wanted to live with an immigrant family and help them get settled in Canada.

“The trend is not necessarily people wanting to live with people their own age, but with people who share their purpose,” said Annie Gaudreault, a Toronto nutritionist and health coach who works with women in midlife. “We don’t relate just by age – we relate a lot more by values and interests. This is what will define the future of aging well because this is what fulfills us, ultimately.”

Despite baby boomers’ resistance to entering seniors’ residences in their older years, many fail to explore different housing options ahead of time, according to Ms. Gaudreault. Too few are willing to have frank discussions about cognitive decline and death: “We have this collective head-in-the-sand,” she said. “We want to optimize our health, but we also don’t want to be in denial.”

She feels the pandemic brought about difficult but necessary conversations among seniors. “The future of aging is not one model. On the continuum of aging, we need it all.”

Dr. Bigonnesse understands the reticence to go into institutional care. “Everyone wants to stay where they are and stay connected to people they know. Your home is full of memories. It’s part of who you are, especially as you age. Disrupting that is a huge transition.”

In order for more seniors to age where they hope to, Dr. Bigonnesse said large-scale shifts are needed: more accessible housing and transportation, higher-quality home care and community-based services.

“What is your hope and dream, what do you wish emotionally versus what are you going to be confronted with at some point? Aging is a challenge as human beings, especially in a society where we are so ageist and so focused on staying young. Accepting that at some point you might need help, this is very difficult. It’s very humbling.”

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