A NEW APPROACH
Dementia care’s evolution
Erna Dreger held out as long as she could. She kept her husband Paul out of the seniors care system for nine years, caring for him at home after he was diagnosed in 2003 with early onset Alzheimer’s disease.
But Paul, now 80, liked to go for walks by himself. Erna realized his wandering had become dangerous when he got lost and she had to call in police to find him.
“I knew I had to be smart before something tragic happened,” said Erna, 77.
As she began her agonizing search to find a home for Paul, Erna heard about the Czorny Alzheimer Centre in Surrey. She didn’t know that it was considered among the best publicly funded residential care homes for people living with dementia in the province.
She liked Czorny’s intimate design, which groups 12 residents together in a cottage-like setting. Each has a private room with en suite bathroom and shower.
There are no long hallways like those in institutions such as hospitals. Instead, the living areas are designed so that residents can keep walking without feeling trapped by coming up against a locked door. Residents can also go outside and walk a path in the garden that is bounded by a high fence.
Maybe the biggest plus for Erna is that the staff at Czorny let her play a big role in Paul’s care. She visits him twice a day, usually late in the morning to help him shave, and again at dinner to help feed him.
At 6 p.m., they watch the TV news together. This month, the couple will have been married 58 years.
“I’m happy that I can help Paul, so the staff can be with other residents who don’t have anyone,” she said. “I’m hoping that more facilities like this will be built. Paul and I are very grateful.”
Paul is one of 72 residents at Czorny, one of the province’s 293 residential care facilities — often simply called nursing homes. Altogether, they care for about 27,000 people.
Czorny is unique in several ways, including its groundbreaking approach to design and the flexible way it cares for people with dementia. But it’s also part of the story about the growing number of people with dementia.
In B.C. in 2018, about 70,000 people live with dementia. By 2033, that number is estimated to increase to almost 120,000. Nationally, the number of people with dementia is expected to increase to 937,000 from 564,000 in the same period.
Part of the reason for the increase in the number of people with dementia is that people are living longer than ever before, said Dan Levitt, an adjunct professor of gerontology at Simon Fraser University. Advanced medical technology, better disease prevention and better nutrition means that many traditional diseases, such as cancer, diabetes and stroke, have become manageable and chronic.
Many people now live into their 80s, 90s and even past 100. “The fastest growing segment is people over 100,” he said.
And because of that bigger pool of elderly people, more people live longer and go on to develop dementia, including Alzheimer’s.
“We’ve never seen this many old people and this number of people with dementia. It is a societal issue.”
Isobel Mackenzie, B.C.’s seniors advocate, said while it appears that a wave of dementia is about to sweep over the country, she advises a more nuanced approach.
The No. 1 issue with aging and dementia, she said, is to recognize that most seniors do not have, and will not get, dementia.
“It’s so we’re not creating an expectation and fear and we aren’t treating people who don’t have dementia in an undignified way simply because they look like people who do,” Mackenzie said.
She said people should realize that dementia isn’t a single disease but describes a number of degenerative brain diseases. While people with dementia often share certain characteristics, its progression in each person is unique. The most common form is Alzheimer’s, which makes up 64 per cent of people with dementia.
As the total number of people with dementia grows, their demographic profile is also changing. Because seniors are living in their homes longer, they’re going into nursing homes when they ’re older and have started to show signs of dementia or other physical challenges. The average age today of entry is now 85.
Many of the province’s nursing homes are in older buildings designed to resemble hospitals, with long hallways and nursing stations. They’ve been built on an institutional model and tend to have inflexible systems of caregiving that require residents to fit into a predetermined schedule.
It’s a model, for example, that forces everyone up at 8 a.m. to finish eating breakfast by 9 a.m. rather than allowing them to decide for themselves when to wake up and when to eat their first meal of the day.
Mackenzie said what’s needed is an attitudinal change to combat the limitations of the physical environment in nursing homes.
No. 1, she said, is to persuade care staff that what they’re doing is providing services to people in their home. She said being in a residential care facility should be more like staying in a hotel where a service is being provided to a customer.
“Unfortunately, in our public health care system — which has tremendous benefits — there is an unintended consequence: the arrogance of a monopoly service provided by government,” she said. “That mentality, to some extent, is in our residential care system.”
Czorny is one example of a patient-centred approach.
From the inside, Czorny looks more like a suburban home than an institution. Medications, for example, aren’t left on trolleys in hallways. They’re in their own room and only brought out when needed.
The Czorny is so not institutional that Paul Dreger kept trying to tip after meals when he first moved in. He thought he was living in a hotel.
Paul lives in one of six cottages. Designed in an A-shaped pattern, each cottage has a living room area with sofas, a central kitchen and different areas for eating.
Erna isn’t sure why Paul was able to get into Czorny in 2013. She was told by a case worker that he might be on the waiting list for a couple of years.
I’m happy that I can help Paul, so the staff can be with other residents who don’t have anyone. I’m hoping that more facilities like this will be built. Paul and I are very grateful.
Instead, there was an opening within three weeks. She thinks that Paul may have been chosen in part because he was still physically healthy and mobile, and younger than most people with dementia who need to be in a home.
Paul’s first name is by the front door of his suite along with photos of him with Erna. One photo shows Paul as a much younger man taking a swing with a driver on a golf course.
Every night, during her second visit, Erna lays out Paul’s clothes for the next day.
“It means everything to me to be involved in his life,” Erna said.
As a publicly-funded facility, Czorny is unique not only in its design but in how it was built. It exists because of a donation of its 3.39 hectare (8.4 acre) site and $10 million by the family of Marilyn Stewart. Her father, Michael Czorny, lived with Alzheimer’s in the 1960s when there was little awareness of the disease. During one six-month stretch, he was heavily sedated and restrained in a straitjacket. He died in 1985.
After that painful experience, Marilyn dreamed of building a facility that was “comfortable and homelike” and designed for people with dementia.
Louise Brown is the clinical manager at Czorny. She’s worked at the centre since it opened in 2007. She said that unlike many residential care facilities, residents are allowed to wake in the morning at whatever time they want. If they miss breakfast at 8:30 a.m., that’s not a problem. There’s always food available for a late riser.
Brown said the goal at Czorny is to make the centre as much like home as possible. The day isn’t traditionally organized with specific activities at set times such as bingo at 10 a.m. followed by chair exercises an hour later. In part, that’s because staff has found that kind of structure doesn’t work for people with dementia.
“We change the system to fit the resident,” Brown said. “We don’t try to adapt the resident to the system.”
Other examples of the new kinds of approaches to caring for people with dementia include The Village, a privately funded dementia village for 78 residents in Langley scheduled to open in 2019. Another is Providence Health’s project at Heather and West 33rd in Vancouver.
Providence plans to build the first publicly funded dementia village with multiple levels of care for about 300 people on the old St. Vincent’s Hospital site.
Dan Levitt, in addition to teaching about aging at SFU, is executive director of Tabor Village in Abbotsford. Tabor has 261 beds, suites and rental apartments that provide a continuum of care from independent living to complex care. Earlier this year, Tabor Village was awarded an exemplary standing, which is the highest honour given by Accreditation Canada, the country’s independent surveyor of institutions caring for seniors.
Tabor Society is a not-for-profit Christian society funded by Fraser Health with some private pay beds.
Levitt believes the untold story about traditional nursing homes is their emotional disconnectedness. “They ’re devoid of touch, the kind of human interaction that most of us have in our lives. It sustains us,” he said.
The damage of not being touched might not be visible like a bruise from a physical injury but it’s still there.
“There is something going on in the warehousing aspect that is damaging to the soul of a person,” he said. “I think it has an equal impact on the individuals who are caring for them and their families. It has a damaging affect on everyone.”
The current system, Levitt said, gives older adults or their families little involvement in choosing what will likely be their last home before they die.
The lack of choice is so restricting that in some cases, he said, a health authority will assign a person not only a particular room but the same weekly bath time as the person who previously occupied the room and had died.
Getting into a centre such as Czorny isn’t easy.
To be eligible for Czorny, for instance, a senior must live in the Fraser Health region because admission to subsidized residential care is managed by the local health authority in each of B.C.’s five regions.
After an evaluation by a case worker, a senior is assigned to the first available and appropriate bed. Sometimes, the family of the person living with dementia isn’t ready for the big move or decides the institution isn’t a good fit. If the bed offered by the health authority is turned down, the senior goes stays on the waiting list for the next available bed.
Next year, Tabor plans to start raising $11 million for a new $36-million centre in Abbotsford designed along the lines of The Green House Project. Part of a movement started in the U.S. by Dr. Bill Thomas in 2001, Green Houses are designed to create a more humane alternative to traditional nursing homes.
Tabor plans to build a six-storey home with 14 people in 11 households — 154 in total. In each household, residents will be given autonomy and independence to make decisions about how they live together as a group. The new Tabor centre will have 140 funded beds and 14 private-pay beds.
“They can decide how they spend their day — regardless of where they are in the dementia journey,” Levitt said. “They will decide when they have breakfast and what activities they want to do.”
Families will be encouraged to be involved in caregiving and staff will be multi-skilled and trained to maintain a home for residents. The care home won’t have long hallways or impersonal cafeterias.
“If (staff isn’t) task-focused to do certain tasks by a certain time, they could spend time emotionally connecting with the residents, which, I believe, combats loneliness, helplessness and boredom,” he said.
“I believe the workers will have a better quality of work life because they will be more emotional and relationship focused.”
Even a nursing home in an older building designed according to a hospital model can provide residents with a fulfilling life — as long as a patient-centred approach starts with leadership.
“At the end of the day, the residents live in a house that we happen to work in. They don’t live in our workplace. If we have that perspective, then how can we serve them best?” Levitt said.
“How can we design our jobs around them?”
They’re devoid of touch, the kind of human interaction that most of us have in our lives. It sustains us.
... There is something going on in the warehousing aspect (of traditional nursing homes) that is damaging to the soul of a person. DAN LEVITT, executive director, Tabor Village