In the middle of the pandemic, when baby boomers hit the milestone age of 75, they awakened to the reality of growing old in Ontario — and they’re not going quietly into nursing homes.
The deaths of thousands in long-term care was more than a wake-up call. It has turned into a growing movement and — for the first time — Ontario’s election polls are highlighting a powerful demand for a new, small-home style of long-term care, better at-home community supports and more day programs to help older adults stay socially connected, especially those with cognitive decline.
“Aging well is an issue that commands the attention of politicians,” said Craig Worden, president of Pollara Strategic Insights. “These are not fine details in data — they speak loud and clear and the numbers are quite large.
“The ultimate demand we’re seeing in the data over the last couple of years demonstrates a strong desire to age at home for as long as possible and to have the support necessary to be able to do that.”
Calls for change are widespread, Worden said, with strong interest among older adults (reliable voters), generation X (the new caregivers) and, to some extent, the millennials, who watched their grandparents suffer during the pandemic. Heading into the spring election, politicians are now promising better home care and, from the Liberals and NDP, smaller nursing homes and the elimination of for-profit nursing home operators.
“Ignore this demographic at your peril,” said Laura Tamblyn Watts, CEO of national advocacy group CanAge.
“Voters are really fed up and they’re not looking to have all the old promises and hand-wringing that we’ve had before,” Tamblyn Watts said. “There is agreement on what we need, and they’re going to be judging political parties on who is going to implement it — and how fast.”
At the Alzheimer Society of Ontario, CEO Cathy Barrick launched “VoteDementia.ca” — a campaign with contact links for each provincial candidate — calling dementia a critical discussion in the election. Currently, 260,000 Ontarians have dementia, the society said.
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“The number of people living with dementia in our province will double in the next 30 years, and our health-care system and community supports are not ready,” Barrick said. “In fact, our systems can’t adequately support the current number of Ontarians living with dementia. We are in a crisis.
“We know that people want to age at home, including those living with dementia, and we need to develop a renewed Ontario Dementia Strategy to ensure we can support people,” she said.
Ontario has roughly 3.3 million caregivers providing support to family or friends of all ages, according to earlier Pollara research published by the Ontario Caregiver Organization. Some care for loved ones at home, others in nursing homes. Many feel burned out.
With the number of Ontarians over 65 expected to double by 2046, the next decade could see the rise of the caregiver.
“We believe that caregiving is the next frontier of Canadian public policy,” said Liviya Mendelsohn, executive director of the Canadian Center for Caregiving Excellence, a new organization that launched this month.
“Voices are growing and calls for substantive policy change are getting louder across the country,” Mendelsohn said. “The trends underpinning the size and growth of both seniors and the number of people who will provide care for those who need it are unignorable.”
One of the greatest impediments to aging at home lies with the shortage of front-line home-care staff. It’s an industry-wide problem made worse by the pandemic.
Shirlee Sharkey, former CEO of SE Health, a not-for-profit that provides home care, said governments can tackle that shortage by treating all front-line staff equally. The current hierarchy pays hospital workers the highest wages, followed by nursing home staff and finally, home-care workers.
We need to make “people working in the community as valued as those working in an acute-care hospital,” Sharkey said.
Ontario is decades behind European countries in preparing for its aging demographic. The related issues are expansive, from ageism to staffing, but Sharkey recommends tackling transformation through a pragmatic approach.
“With aging in the community, you can easily say, ‘OK, let me give you a PhD thesis on everything that needs to change in home care,’ ” she said. “By the time you finish that whole thing, we really haven’t addressed the seven other things that people need to age well in their community.”
Ontario’s initial focus, Sharkey said, should be on high-quality home care. Once that is reliably in place, she said, the philosophies on how and where older adults live will change. “It will finally shift the concern of getting people out of the hospital and into long-term care.”
Gone are the days when voters were mollified by yet another expert report.
Now, long-term-care residents Gale Ramsden and Devora Greenspon represent the Ontario Association of Residents’ Councils on a government committee focused on regulations for the new long-term-care act.
Their message to bureaucrats? Get rid of the medicalized culture of nursing homes.
“It is the fulfillment of my needs during the day that makes life worth continuing, even in long-term care,” said Ramsden, who lives at Perley Health in Ottawa.
“I need challenges, intellectually and socially, interacting with friends and family. Those are the things going forward that — I think — the evolved model of long-term care you have recognized they need to be designing around.”
Long-term care is not a destination that most seek. New residents usually have major health issues and, often, severe cognitive decline. Others may have no one to help at home, or caregivers who have grown exhausted. There is a wait list of 40,000 for nursing homes and despite government investment, the capital funding for new developments still follows old design standards for large units of 32 people that look and feel like institutions.
That’s why there’s a growing call for smaller households, like the Green House model, that can be created within larger care homes but also in residential communities.
Kathy Wright is the vice-president of CARP Ottawa, an advocacy group that is pushing for smaller household models.
“People deserve to live in a home-like setting,” said Wright. “If we wait until home care is fixed and ignore long-term care, then it may never get done.”
The Green House Project uses a family-style approach in larger buildings or individual homes. Roughly 10 to 12 people live in each home, with private bedrooms and washrooms. Staff cook meals in open-concept kitchens. Research during the pandemic showed that small households like Green House did better at controlling COVID.
Worden said Pollara’s research showed that Ontarians are seeking nursing homes designed to feel like real homes, and not “warehouses.”
The same sentiment emerged last fall when the Health Standards Organization, working on national long-term-care standards, published survey results from 16,000 people, most of whom live in Ontario. As chair of the national standards committee Dr. Samir Sinha said that number is higher than those surveyed in most political polls.
The HSO survey showed a strong interest from women who often end up as caregivers. Many respondents wanted not-for-profit nursing homes and philosophies focused on residents’ individual interests. They were also seeking better options to live independently in the community — with funding that follows the individual, so people have choices in where and how they live.
Staying at home is the goal for many, but it can also be isolated. Worden’s research showed a “strong demand” for government funding for community programs that enable older adults to “get out of the house and interact with others.”
Sinha, director of geriatrics at Sinai Health and the University Health Network, said successful aging at home requires opportunities for social connections.
For those with cognitive decline, that could mean enriched day programs.
Sinha said day programs focusing on exercise, music, art or storytelling provide many benefits, including much-needed caregiver respite, and can keep those with dementia active, delaying the decline that can lead to long-term care.
“We have to remember that good, high-quality day programs can do a lot to stimulate a person’s body, mind and spirit,” he said. “Just because you have dementia doesn’t mean you have to stop living.
“But when you don’t have good-quality community programs or services that allow people to get out of their houses to remain active members in our community, that could have the decline from dementia and lead to a higher rate of premature institutionalization.”
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