The Fix: Part I
THE BUTTERFLY EFFECT A nursing home in Peel stepped away from the traditional model of care and took a gamble on fun, kindness and affection. The most dangerous story we can tell is how simple it was to change
Kenroy Foxe leaves his basement apartment in north Brampton, hops into his beat-up Honda and drives south for an afternoon shift at the nursing home where he will inevitably get punched in the head.
Kenroy is tired of being a human punching bag, taking jabs from residents.
It’s a job hazard, for sure, but as he weaves his car through traffic, Kenroy starts thinking about the visiting dementia guru from England. His ideas seemed subversive at first but now Kenroy wonders, could they work?
By the time he arrives at the dementia unit, Kenroy has a plan for Fred, the 89-year-old whose fists hit hard. Kenroy does something that could get him fired in another home.
It works so well that word of his success grabs the attention of the home’s senior medical director, upending his long-held notions of care.
Kenroy’s epiphany is one of hundreds of small but momentous changes inside the Redstone unit at Peel Region’s Malton Village long-term-care home. They could transform the way Ontario cares for its aging population, proving that a warm, lively nursing home is not that difficult to create.
Odds are that anyone of a certain age with serious cognitive or medical decline will end up in long-term care.
Ontario’s 630 homes are controlled by 300 provincial regulations that keep staff focused on the tasks of feeding, scheduling and cleaning, all documented for government collection. It’s a detached, antiseptic end to life. Some call it a culture of malignancy. It is the not-so-distant destination for the great mass of Boomers, who are all hurtling toward their fragile years.
In Peel Region, a couple of bureaucrats decided to take a risk on a care model that promotes, well, love. Now, Kenroy’s unit is shoving aside the old clinical ways, with plans for laughter, friendship, energy, tenderness, freedom and hope. Try collecting data on that, Health Ministry.
From inside Peel’s yearlong experiment in nursing home radicalism, here’s how it all went down.
Every day Inga Cherry sits for hours at the end of a long hallway in a locked dementia unit and stares at the cars speeding along Mississauga’s Derry Road.
“I’m in a cage,” she says. “In a cage.” Watching the traffic makes her feel like it’s the 1970s and she’s sliding onto the red leather seats of her Chevy Vega, silk scarf tied under her chin, driving with her daughter on a Manhattan getaway or north to Algonquin Park.
Inga’s memories tease with freedom past. She clings to those days, still dressing in her black leather pants, clutching a ruby-red purse that swells with pocket mirrors, lipstick, pink nail polish and pictures of herself from 1942.
“How old am I now?” Inga asks. “Ninetyfour? Never thought I’d make it to 50.”
Outside, the early spring sun is warm but Inga doesn’t feel it. She lives in Malton’s Redstone unit, where every day is 22 C, as required by provincial rules.
Every day, residents are awakened on schedule. Their faces washed, diapers changed, dentures inserted, in time for 8 a.m. breakfast. Inga eats quickly, delicately scraping the final
spoonful of cereal from her bowl before 8:30, when the plates must be cleared.
This will be her final home, shared by 25 people in serious neurological decline, losing language, balance or bladder control, all in unique stages, as the brain slowly stops functioning.
People who once ran companies, created art or taught science are now forced to wake, wash, eat and defecate on schedule.
Peter, once a nuclear researcher in Russia, who has lost all his languages except for Polish, sits in the dining room. The Scottish lady who dyes her hair gold is sitting at a table nearby, slamming wooden blocks through the slot of a box. “No idea what I’m doing,” she says sharply, to no one.
Every 15 minutes, Fred Smith shuffles past the dining room on his endless loop around the corridor. His cheeks sink into empty gums and he doesn’t speak, not much anyway, but say hello and his eyes shine with such warmth it’s startling.
He rounds the corner and ambles up to the Professor, a tiny man with tufts of white hair and extends his arm, palm open, hoping for a game of let’s-shake-hands. “Go away!” the Professor says. The Engineer in the hallway waves him off, turning his back. So Fred wanders, down the corridor, into a bedroom. From inside, a staffer says, “Fred, this is not your room. You need to leave.”
Fred finds a chair in the TV lounge and sits, head slumped. Three people in wheelchairs have been left in the middle of the room, facing CP24’s daily mash-up of Toronto crime, politics and car accidents. Their faces are blank, eyes unfocused.
Soon they sleep, chins resting on chests, as the days merge and, outside, spring flows into summer.
Right now in Ontario, most of the 78,000 people in long-term care live this way.
In November 2016, when David Sheard, the nursing home specialist from England, was invited by Peel Region officials to assess the dementia unit where Inga and Fred live, he declared it empty of kindness, laughter or any semblance of homeyness.
The Peel Region bureaucrats who officially hired him in March 2017 have a plan to do something unusual, possibly even extraordinary.
Inga, Fred, the Professor, the retired engineer and the hospital orderly are part of an experiment: let people live, before they die.
Kenroy has always been told to follow the rules, stay on schedule and focus on tasks. Keep people fed, clean, safe and quiet. Document every hour on the hour. Every day, when he arrives for his 3 p.m. shift, Kenroy first heads upstairs to the staff room. He sticks his lunch — today, rice and beans — in the fridge and goes down to Redstone where, at some point, Fred’s fist will catch him, usually on the cheekbone.
All Fred knows is that a stranger is trying to pull down his pants and he doesn’t like it. Kenroy knows he has 11 people to be toileted, served snacks, moved from the lounge to dining room, spoon-fed dinner, returned to the lounge, offered juice, walked to rooms, washed, toileted and put in bed.
Every day, at least 60 minutes out of Kenroy’s eight-hour shift is spent filing ministry updates on residents. It has to be done hourly, so Kenroy is constantly rushing to meet the deadline.
In the late afternoon, he sits, his back to three residents, facing the touch-screen computer mounted to the dining room wall. He’s racing to finish his documentation before the screen turns pink for “late.” Nobody wants pink.
Kenroy taps icons for mood, mobility, meals and bowel movements, all to be compiled as ministry data. There are no icons for laughter, conversation, human touch or sense of purpose.
Across Ontario, nursing home staff tap the government-issued computers, every hour, every day.
It’s a model of efficiency that fits the homes’ interpretation of ministry rules and the operators’ bottom line.
Fun is scheduled, sometimes three nights a week between 6:30 and 7 p.m.
On the east side of Toronto, inside another dementia unit, the schedule for socializing is pinned to the bulletin board in the dining room. After dinner, a worker sings lyrics streaming across a television screen. Some residents join her, others sit, heads low, until singing time ends and they all sit in silence.
This is how the system operates. It’s a world that David Sheard wants to obliterate.
“Our mission is to prove that dementia care could be very different … from a model that is just about physical safety and sedating people in order to respond to their behaviours,” Sheard says.
In the new model, he adds, “we get love back into care.
“We give staff permission to stop being detached. It’s a place where people with dementia are busy, in their own ways that we don’t always understand, but you know it’s linked to something in their past. And to be busy you need a place full of the stuff of life — not an empty building called long-term care.”
In a conservative industry, Sheard is a cardigan-wearing disrupter with a degree in social studies and an honorary doctorate from England’s University of Surrey for his innovation in dementia care.
His company has 37 “Butterfly” homes and projects across the U.K. and Ireland, six in Alberta (one private nursing home and five assisted-living homes), five in Australia and one in the United States.
Sheard promises staff jobs of immense personal satisfaction, saying they will build deep friendships with the people who live in the homes.
Kenroy’s industry is risk-averse, but the Redstone dementia unit is about to turn itself upside down. As he will soon learn, a simple act of affection can stop the punching.
Ron Starr is the nasty guy on Peel regional council, the businessman-turned-politician known for his ruthless denial of budget requests.
Sitting at the council table, Starr bristles, shoulders hunched, eyes narrowing, voice hard.
Today, March 30, 2017, he’s avoiding eye contact with Sheard, the 59-year-old former social worker with chubby, youthful cheeks and a chipper British accent.
Sheard knows he has a tough job, persuading Starr and his fellow councillors to accept change, along with his $100,000 fee for the 12month program.
He’s upped his game today, ditching the cardigan for a striped dress shirt and tartan tie. It was an easier crowd four months ago, in November 2016, when he spoke of transformation to Peel nursing home managers.
The region’s long-term-care leader, Nancy Polsinelli, listened with eyes glistening. Staff
“Our mission is
to prove that
dementia care
could be very
different …
from a model
that is just
about physical
safety and
sedating people
in order to
respond to their
behaviours.”
DAVID SHEARD
BUTTERFLY
FOUNDER
at her table all had tears, except Peel’s senior medical director of long-term care, Dr. Sudip Saha. He sat upright, in a crisp dark suit, listening.
Now, Peel councillors will decide. The chambers are packed, and silent.
“We bring the world so close that … you are not an empty soul,” Sheard says. “And what happens is, people with dementia start to come alive again in ways that we could never have dreamt.”
These conclusions, says Sheard, come from 750 audits of nursing and retirement homes, examining minute-by-minute interactions between staff and residents. Sheard and his company, Dementia Care Matters, audit homes three times, once to get a baseline assessment and twice during the yearlong program.
Butterfly’s findings mirror those found in the Green House Project, an emotion-based model started by New York state geriatrician Dr. Bill Thomas. It is used by 246 homes in 33 states. Both programs show the same results: happier residents, fewer falls, diminished violence, lessened antipsychotic medication and lower staff turnover.
Sheard tells the story of Bill, a violent 82year-old Englishman kicked out of multiple homes because he and his cane could “take down anyone half his age.” When Bill arrived at a Butterfly home, Sheard says staff endured weeks of bruising before suggesting the lifelong farmer collect hard-boiled eggs in the courtyard before tea. It tapped into his past, and the job clicked.
“He did that every day for two-and-a-half years until he died, and he was a lovely man who wouldn’t have dreamt of raising his stick at us,” Sheard says.
One of the last regions of the brain to deteriorate is the part that holds deep, primal emotion, so when dementia robs a mother of intellect, Sheard says she lives with vivid scenes from the past.
“When everything else goes, you will know the tough moment you miscarried, the moment you were fearful your husband might hit you, the moment you actually felt your daughter disappear from your life.”
Imagine, he says, living with those memories in a place where no one reaches out to comfort.
Without improvements, this will be the lonely existence for hundreds of thousands of Canadians. An estimated 564,000 Canadians are living with dementia, according to the Alzheimer Society of Canada, with annual public and private costs reaching $10.4 billion. By 2031, those numbers are expected to hit 937,000, with annual costs of $16.6 billion. The odds of developing dementia double every five years after the age of 65. And that, Sheard tells the councillors, means Canadians must demand change.
“We want families to realize, yes, you have been losing your relative to dementia; yes, it is painful, but there is a bridge you can cross and if you cross the bridge into the person with dementia’s reality … you can learn to re-love them as they are now.” Councillors give Sheard a standing ovation. Mississauga Mayor Bonnie Crombie dabs tears from her eyes with a white tissue, describing her grandmother’s experience with dementia.
“What she enjoyed doing was singing Polish songs and playing Polish card games from her childhood,” Crombie says.
Councillor Starr’s face seems tight, hard to read.
The session is nearly finished when Starr leans into his microphone. In an unexpectedly soft voice he speaks of his wife and the Alzheimer’s disease she developed in her 50s. Elaine Starr died at the age of 69 on Nov. 21, 2013.
“Elaine was in long-term care in her last year. But it was a warehouse. It truly was a warehouse. The home just gave them antidepressants … put them in the wheelchair because staff aren’t trained to deal with this.” His voice cracks.
“A program like this should spread like wildfire, it really should.”