The reality that long-term care can be better
By Courtney Bachar
Moira Welsh has spent almost two decades writing about seniors living in long-term care and has recently released a book, Happily Ever Older, which details new approaches to how we as a society should look after the elderly.
The genesis for the book began in 2003 when Welsh, an investigative reporter with The Toronto Star, began talking to people about long-term care.
“There were a lot of stories about the aging demographic and the first wave of the boomers turning 65,” she explains. So, she took a deep dive and began an investigation into the world of seniors living in long-term care.
Welsh scoured countless Freedom of Information (FOI) requests and inspection reports to see what she could uncover.
“Some (FOI’s) looked at complaints from residents, workers and families about long-term care homes. Others looked for serious occurrence reports on violence, whether it be resident-on-resident, staff-on-resident, or resident-on-staff violence.”
During her research, Welsh visited some homes where she says they were doing amazing work, but then she’d also been to others that she describes as “bleak” in terms of the care that the residents there were receiving.
“I’ve been in homes that just leave people sitting in a chair alone in their room. It’s actually heartbreaking to go and see what their lives are like,” she says, noting some of these are homes that would be considered to have a good reputation.
Ultimately, her research produced a 10-part series in The Toronto Star on abuse and neglect in long-term care, and it led with a narrative about a woman named Nathalie Babineau, who had lived in two long-term care homes and had negative experiences in both.
“Her family was unaware that she had a very significant pressure ulcer on her tailbone and when they discovered it, it was extremely wide and deep. She ended up going to the hospital where, ultimately, she died,” Welsh recounts.
Welsh’s exposé led to a meeting with then Ontario Minister of Health, George Smitherman, who promised a “revolution” in long-term care, a revolution Welsh says never happened.
“It did lead, in part, to new legislation for nursing homes and the Long-Term Care Homes Act, which included the promise of a tougher, more rigorous inspection system.”
However, while it started with good intentions, Welsh says some of the necessary elements were missing from the regulation that would be needed to actually hold homes accountable.
“So, I just kept writing about it over the years.”
She would write of the revolution that didn’t happen, and she wrote countless stories that looked at individual cases of abuse and neglect. And, in 2011, another series was released with co-author Jesse McLean that looked at yet another new inspection reporting system.
However, in 2017, things switched gears and Welsh was invited to a home in the Region of Peel to witness what was then called the Butterfly Program – created by a man named David Sheard – an initiative adopted from a U.K.-based model for the transformation of dementia units.
It was the first nursing home in Ontario to implement this new way of senior living – a place of warmth, friendship and love.
Welsh watched the program unfold for more than 12 months, writing a series in The Toronto Star in June 2018, followed by a documentary based on the series.
The story received tremendous response from families who were now excited about the possibilities of long-term care for their loved ones.
“People were so hopeful and excited about the possibility,” she says. “That inspired me to go out and see what else was happening out there in the world.”
“Reactions from readers exposed a hunger for more stories of change, of living happily as we grow older. It became a quest, of sorts, to find more of those stories, more people taking chances, more proof to hold governments and industry to account, showing we transform the way older people live.”
Welsh’s book, Happily Ever Older: Revolutionary Approaches to Long-Term Care, tells stories of seniors living with purpose, energy and love – stories she says could “change the status quo.”
Welsh travelled the world, visiting facilities across North America and Europe to see the revolutionary approaches being developed for community living for the elderly.
She visited many places and experienced a variety of philosophies and ways of senior living and, while she didn’t compare models, there was one that stood out as a personal favourite.
“I found them all really interesting in their own way.”
However, she says Carol Woods Retirement Community in Chapel Hill, N.C. was a standout.
“This was a retirement community in the middle of a forest — it was absolutely beautiful,” she explains, noting many people have said they want to move to Carol Woods in Chapel Hill simply because it was lovely, or because of the program philosophy they used.
While the philosophies may be similar at different care facilities, Welsh notes they’re also different in many ways, which is a good thing.
“People need choice and not all models will work in all facilities, recalling a place she visited in the Netherlands. The place is located in a space of about three acres and all the residents have the freedom to leave their home with immediate access to the outdoors.
“They can go for walks, go to the store with a caregiver… depending on the level of cognitive decline they have, there’s a lot of freedom to move around during the day in a place that’s still what people would call safe.”
She says different communities have different needs and interests and people should be able to look at the philosophies and see what works for them.
Welsh mentions that an elderly home in downtown Toronto that doesn’t have a lot of space, would likely not be a good candidate for the village design.
However, another model like Eden Alternatives, which Welsh writes about in her book, would work well giving seniors the freedom to go outside in whatever space they have, but also brings in a lot of plants, pets, and artwork.
Dr. Bill Thomas, the visionary behind the Eden Alternative, dreamed of life in long-term care homes that brought the calm of nature indoors, with green space and gardens. As the philosophy grew, so did the idea of kindness and companionship – by bringing pets into the home. The residents would care for the pets and plants, which also gives them a task.
Welsh says there’s so much an individual with cognitive decline can still accomplish, and society needs to start talking about it more openly and discussing the right of people with cognitive decline to be able to live a full life.
“What I saw were people who were very engaging, very involved in their world and their community. Yes, they had significant cognitive decline, but they were also having great conversations and lots of humour. They were still very interesting people.”
This is a reality, she says, many people don’t recognize unless they are immersed in the long-term care world.
“We are fearful of dementia, but there’s so much life left for people with cognitive decline and we need to recognize that.”
In her book, Welsh notes the odds of developing dementia will double every five years after the age of 65.
Further, according to the Alzheimer Society of Canada, nearly six million people have Alzheimer’s disease or other types of dementia in the U.S. In Canada, with a population one-tenth the size of the U.S., there are 564,000 people with some form of cognitive decline.
In Ontario and across North America, Welsh writes, “There are waiting lists for most long-term care – at least for the better homes. Once inside, many will be prescribed multiple pills, including antipsychotic drugs to control the so-called “behaviours” the system claims are a symptom of dementia but which advocates say are mostly the result of boredom, loneliness and a life without meaning.”
What’s more, Welsh says the COVID-19 pandemic has really brought these issues to the forefront.
“I think there’s a reckoning because of what we’ve seen happen in long-term care over the last year, for all homes and government and the way we view long-term care, operate it and fund it.
“It always existed, and it always will. If we don’t change now, based on everything we’ve seen over these last months, then I’m not sure we ever will,” she says. “There’s momentum there now. My fear is that we will go back to our old ways once the pandemic is under control.”
She notes governments will move on, and people will forget about issues that seemed important a year earlier.
While Welsh started writing her book well before the pandemic, she says it is still meant to be a call to action for everyone – for families, workers, people in the industry – so they can see what other leaders are doing.
She says Canada’s senior population will grow to between 10- and 11-million by 2036. In Ontario alone, she anticipates a jump from 2.3 million in 2016 to 4.5 million in 2040 – and the number of people over the age of 85 is expected to triple in that time, as well.
“All of us need to work harder to be more physically fit and healthy, and recognize the importance of that proactively,” she says. And then, there also needs to be options for living.
“We do need better home care. It’s not enough right now.”
She uses her parents as an example, stating that if they would have had better care while living in their own home, such as someone to help buy groceries or shovel the driveway, they would have done quite well.
She says the extra help is needed, in addition to more day programs, to help people with cognitive decline stay in their homes longer. There is also the need for more respite for families.
“Alzheimer’s or dementia is talked about as a family disease and it really is,” she says. “There’s a real issue with caregiver exhaustion, but if we can put programs in place that can help families to have a break or go to work, the individual in the day program can avoid going to long-term care for a longer period of time – hopefully forever.”
However, Welsh says there will still be the people who are medically compromised to the extent they are going to need to go to a long-term care home, and they can’t be forgotten.
She says it’s time homes started offering real care… care that gives people the opportunity to actually live in their final years.
“Definitely, now is the time where people really need to raise their voices and demand change.”
Happily Ever Older is published by ECW Press and retails for $23.95.