Thousands of under-65 adults with physical disabilities are being forced into Ontario nursing homes: Ministry data
TheStar.com – News/GTA – The health care system is ‘unprepared’ to deal with thousands of Ontarians living in long-term care before the age of 65, experts say
July 9, 2017. By
Deborah Cross was just 56 years old when she left her Ottawa apartment and moved into a nursing home in Maple, Ont.
Secondary progressive multiple sclerosis has limited her mobility, but her mind is still sharp. She does not consider herself to be in the final stages of her life, as so many other residents are. But moving into a home for seniors was her only option.
Now 61, Cross estimates she is at least 15 years younger than nearly everyone else there. She loves her home, but it’s hard to be surrounded by people so much older, who function at a different level, and struggle with all manner of end-of-life illnesses and issues.
“I kind of suck it up and I do my best to be happy because I know that I could be horribly unhappy if I gave myself half a chance,” Cross said.
More than 90,000 people spent time in “long-stay” beds in Ontario long-term care homes last fiscal year, according to the Ministry of Health and Long-Term Care.
Those residents’ average age was over 83. But about 6 per cent of them were under the age of 65, including nearly 2,500 in their early 60s, more than 2,300 people in their 50s, and about 500 in their 40s.
Doctors and residents say they have seen people as young as 21 entering nursing homes, to live with people older than their grandparents.
“Essentially it’s a default scenario because there is nowhere that a young person can go for long-term care, except a nursing home,” said Dr. Abraham Snaiderman, director of the Neuropsychiatry Clinic at the University Health Network’s rehabilitation institute.
“As a society, we’re not prepared to deal with younger patients with cognitive or physical impairments.”
David Jensen, a spokesperson for the Ministry of Health and Long-Term Care, confirmed to the Star that Ontario has no long-term care homes specifically geared to adults under the age of 65.
Younger people end up in long-term care when they require ’round-the-clock assistance or can no longer cope in their own home, whether it’s the result of a stroke, a serious brain injury, developmental disability, progressive types of MS or other degenerative illnesses.
“Long-term-care homes are required to do their best to meet the needs of their residents,” Jensen said, adding that every care home resident has a written “plan of care” based on their needs, which dictates medical treatments, personal support, diet, recreation, social activity and more.
The problem, Snaiderman said, is that long-term care homes are designed for elderly residents. They are “suboptimal” places for treating conditions like MS.
Even if the care and services of the home are perfect, there is a psychological toll to being decades younger than your peers.
“Not only are you around people that aren’t like you, who don’t necessarily have the same capacity as you, but you’re also dealing with . . . a lot of grief, a lot of anger like, ‘Why did this happen to me?” said Julie Kelndorfer of the MS Society of Canada, which is lobbying governments across Canada to place patients in “age-appropriate” facilities.
The challenges of care home life can be as basic as not wanting to eat breakfast at 6 a.m. when the seniors do, or wanting to have pizza instead of an old-fashioned dinner of roast beef on Sundays, Kelndorfer said.
There are more serious considerations, too, like the lack of opportunity to form friendships or even romantic relationships with people your own age.
Cross said the activities her home plans, like bingo games and very easy crossword puzzles, don’t stimulate her the way they do older residents.
“I work really hard at finding things to keep my brain in gear,” said Cross.
Most of her recreation comes outside the home, whether it’s going shopping, visiting friends at her church, attending an MS support group or seeing her family.
Cross said she is close with the staff at her care home and makes a point of getting to know people. But it’s been difficult, she said, to befriend residents who are nearing the end of their lives.
“I’ve watched friends that I’ve made pass away over and over again, and it’s really distressing,” she said. “I never wanted to get used to people dying, and it happens all the time. I can’t help but be aware of it, because it’s right there in front of me.”
The reliance of young adults on long-term care is a problem for senior citizens, too, say representatives of the long-term-care industry.
“Over the next 20 years, there will be a doubling of the seniors’ population across Canada and, by extension, increasing demand on long-term care homes for support,” said Candace Chartier, CEO of the Ontario Long Term Care Association. “We believe that long-term care needs to be available to these seniors, to ensure that these resources are available at a time when they need may need it the most.”
Chartier said her organization, which represents over two-thirds of the private, public and non-profit care homes in Ontario, “believes that long-term care is not the most suitable environment for those under 65.”
For an alternative model for helping younger adults in need of care, Kelndorfer pointed to the Boston Home in Dorchester, Massachusetts, a long-term-care facility that caters specifically to people with MS and other progressive neurological illnesses.
Billed as a place for “intellectually curious” adults who want to live “full lives not defined by their disabilities,” the Boston Home offers residents and outpatients exercise, recreation, rehabilitation and social programs. The average age of their clients is 58.
“It’s the difference between a house and a home,” Kelndorfer said of the struggle faced by young care home residents. “A home is where there are people like you, where you have a sense of belonging, that you feel comfortable and safe. I think those are all challenges for young people living in long-term care.”
https://www.thestar.com/news/gta/2017/07/09/thousands-of-under-65-adults-with-physical-disabilities-are-being-forced-into-ontario-nursing-homes-ministry-data.html
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