Banishing loneliness & boredom
Long-term care in Canada is experiencing a shift to a resident-centred model. The Eden Alternative seeks to create a supportive atmosphere that feels like home.
The lobby at the New Vista Care Home in Burnaby, British Columbia, is alive with chatter and laughter. A comfortable lounge area invites visitors to sit, but I wait my turn by checking out the sign that spells out the home’s mission.
“The three plagues of loneliness, helplessness, and boredom account for the bulk of suffering among our Elders"
Before I have the chance to read the next line, I hear my name called and am told to go on up. Although I’m a few minutes early, Pat Kasprow, the New Vista Care Society’s CEO, is ready to see me.
The elevator up to Kasprow’s fourth-floor office has a menu posted to the wall for that day’s lunch listing a dozen different soups such as French onion, borscht, and chicken rice; hot entrees that include roast lamb with mint jelly, lemon garlic chicken, or vegetable lasagna; and sandwiches and salads that run the gamut: ham and tomato, tuna, smoked chicken with Caesar salad and shrimp, or a BLT salad bowl. Dessert? Who has room, but there’s lemon meringue pie, orange cake, and angel cake with blueberry sauce among the half-dozen or so sweet selections.
This is not your stereotypical nursing home. In fact, it’s a hopeful sign of changing times.
A Fate Worse Than Death?
According to a US study commissioned last year by Clarity, makers of telephone and television amplifiers for the hard-of-hearing, many people over 65 see long-term care as a fate worse than death; 26 percent rated loss of independence as their biggest fear, and 13 percent said they most feared moving into a nursing home.
Attitudes in Canada are equally strident. Results of an Ipsos Reid survey released this spring of Canadians aged 65 to 85 showed 97 percent wanted to reside in their own homes as long as possible, but most also said they avoided discussions with other family members on how to accomplish this for fear it would lead straight to a nursing home.
What’s even more startling is that those aged 75 to 85–when physical and mental decline often starts to become evident–had the attitude that they “won’t require assistance for a long time.”
They’re in denial, according to Sean Simpson, research manager for Ipsos Reid. “When you’re 75, two or three years can mean a world of difference in your health,” Simpson said when the survey results were released.
Holly Quinn, chief nursing officer for Bayshore Home Health, which commissioned the survey, said that anxiety is what keeps most seniors from discussing the prospect of outside help.
“Their greatest fear is that by opening a dialogue, they’ll get put in a nursing home,” Quinn said. “There’s the illusion that, ‘I can do it. I’ll be healthy and okay, and then I’ll just die in my sleep.?
Such fears and unrealistic hopes aren’t really that surprising. No one ever envisions going happily into a nursing home when they get old, because–admit it–most of us do think of it as a fate worse than death.
In many parts of the world, even thinking about putting elderly relatives in a nursing home is an alien concept. Craig and Marc Kielburger are co-founders of Free the Children, which is active in the developing world. They wrote a column for the Toronto Star last March recounting a conversation with a tour guide from Cairo, Egypt, named Abdel Rehim about what he perceives as the biggest difference between Egypt and Canada.
“The largest difference is how you treat old people,” Rehim told the Kielburgers. Elders are held in high regard in Egypt, as they are in India, South Korea, eastern Africa, and many other family-centred cultures. Rehim says he can’t understand the North American concept of old age where the contributions of the elderly are expected to dwindle and they eventually end up in a nursing home.
“People in our community would not even speak to you if you did this,” he said.
Remin wants his parents to live with him, his wife, and two children when they are too old to be on their own, something he considers a “great honour,” the Kielburgers reported.
Anyone who has ever visited an old-style nursing home or extended care unit, where boredom and despair are as palpable as the scent of disinfectant and where the rampant feelings of helplessness are reinforced by a sterile institutional setting that has little warmth or humanity–only rigid rules and schedules–would agree our system is not yet ideal.
Although we’ve made great strides in moving away from the worst aspects of old-style nursing homes, we are not yet at the Egyptian model of revering our elders and the wisdom they’ve accrued over a lifetime.
Canada Cares Better
Yet despite our shortcomings, the Canadian system of elder care is better than that in the US, says gerontologist Dr. Gloria Gutman, Professor Emerita in the Simon Fraser University Gerontology Department, a research associate in the Gerontology Research Centre and a co-leader of the BC Network for Aging Research whose pioneering work at Simon Fraser is respected all over the world.
Most people who require long-term care–referred to as the frail elderly–make up about 5 percent of those 65 and over, according to Gutman.
“Another 10 percent will have major restrictions in, say, mobility, but they are at home with home care support. The other 85 percent are independent and living in regular housing.”
The percentage of those requiring institutionalized care rises dramatically as people reach their 80s, she says. “The average age for admission to a facility is 85.”
Gutman cites BC as a pioneer in elder care, legislating a long-term care model in 1978 that was the first in Canada.
“Historically we’ve been blessed by nonprofits taking the lead role, such as the Lions, Kinsmen, and other fraternal groups as well as ethnic groups … German, Chinese, Jewish. The ethnic minorities really stepped up to the plate on this,” Gutman says.
On an international scale, “Canada does fairly well” in caring for its elders, says Gutman. “The big advantage of the Canadian system over the US is that we are more concerned with universal access, with giving people who may not have a lot of money access to good care.”
In the US nursing homes are largely for-profit, with only 7 percent funded by government. All costs are borne by those who live there, or their families, although there is assistance for low-income seniors.
Where we fall down is in expanding the range of services available to seniors. “You need a range of services. The senior population is not homogeneous,” says Gutman. Cutbacks in home care funding and changes in eligibility rules have created a niche for private companies to move in and offer both extended care and home care support. “This isn’t always good,” she says. “Sometimes people are more profit-oriented than they should be.”
People Before Profit
Carol Pederson, a health care consultant and founder of Pederson Elder Health Group, spent 21 years surveying nursing homes across Canada for accreditation by the Canada Council of Health Services before launching a private consulting business in Nelson, BC. A registered nurse with several degrees in health care administration, Pederson also spent 23 years as an extended care administrator in Saskatchewan and BC.
Pederson says she has seen “big strides” made to improve extended care facilities, particularly in the shifting focus from basing assessments strictly on interviews with managers to actually including the views and suggestions of residents, families, and staff.
“I’ve surveyed many, many excellent facilities and also seen some horrible places,” she says of her work with both private and publicly funded care homes.
“I’ve come to the conclusion also that there’s nothing wrong with making a profit, but when profit becomes more important than the people you’re serving, that’s when real problems arise, and that’s when it hits the news,” she says. “The really good companies know you can’t compromise residential care, that you have to take care of your employees, and you have to have ongoing training and education for staff because things change so quickly. You have to invest in that.”
Pederson says one of the more promising developments in elder care is the Eden Alternative, which has been embraced by a number of facilities in Canada. It’s an American initiative, but the Sherbrooke Community Centre in Saskatoon, Saskatchewan has so fully integrated its principles that it has become a living classroom for caregivers from all over the world to see how the Eden Alternative can be fully implemented.
Come to the Garden
Dr. Bill Thomas was a physician in a small nursing home in upstate New York in the early 1990s when the light went on for him.
He was taking a break from regular work as an emergency room doctor, and found he loved working with the elderly. But he hated the institution that was housing them.
The Eden Alternative was born.
In And Thou Shalt Honour, a 2005 PBS special, Thomas explains the idea this way: “The nursing home takes good, loving, caring people and plugs them into an institutional, factory-like arrangement. It’s no good. So what I want is an alternative to the nursing home, an alternative to the institution and the best alternative I can think of is a garden.
“I believe that every elder should have a chance to live in a garden. I believe that, when we make a place that’s worthy of our elders, we make a place that enriches all of our lives–caregiver, family member, and elder alike. So the answer the Eden Alternative provides is a reinterpretation of the environment elders live in, from an institution to a garden. That’s why we call it the Eden Alternative.”
Today Thomas has helped “Edenize” more than 300 facilities in the US. Nine care homes in Canada have undergone a similar process–two in Alberta, two in Saskatchewan, one in Ontario, and five in BC, among them New Vista Care Home in Burnaby, BC.
The Eden Alternative is based on 10 principles, the first of which states: “The three plagues of loneliness, helplessness, and boredom account for the bulk of suffering among our Elders.”
The other nine set out how to banish those plagues, specifically by creating a real home full of warmth, companionship, and activity.
Instead of the institutional model of regimented schedules, limited activities, and minimal contact with outsiders, residents have the final say in how they will live there. If they want to sleep in, they can. If they want to tend a garden, small plots in raised beds are set aside for them. Pets are encouraged and children are welcomed regularly, either on daycare or classroom field trips, or when staff bring in their own children.
Artificial flowers are replaced with real greenery, birds chirp and sing in outdoor aviaries or in cages in individual rooms, and cats make the rounds to eager laps and arms waiting to cuddle them. Those who can and want to are encouraged to help with some of the chores or other responsibilities in the home, giving these elders purpose and alleviating their feelings of helplessness.
Residents don’t live on floors, but rather in “villages,” even in an older building such as New Vista, which was built in 1975 and still has the long hallways of its original institutional purpose. The walls here are lined with original artwork, much of it done by residents, and the villages sport names such as Rose Garden, Willow Place, and Aspen Grove.
It’s a shift in culture that isn’t easy to accomplish, but places such as New Vista have done so by including everyone–management, staff, residents, and families–in the process, says CEO Kasprow.
Because the institutional culture is so deeply ingrained, it takes a long time to shift to a resident-centred model, Kasprow says. “It’s not something tangible, really. It’s something inside … Eden is a philosophy.”
In the book, The Road to Eden North: How Five Canadian Long-Term Care Facilities Became Eden Alternatives (CHA Press, 2004), Suellen Beatty and Cheryl George of Sherbrooke Community Centre in Saskatoon sum up how the Eden Alternative can work in any facility that’s committed to change: “Long-term care is rich with staff who truly care for elders, who are working to create environments that feel like home, and who support a high quality of life for the people in their care.
“Still, with committed people who mean well, the improvements we desire are slow to come. The Eden Alternative … acts as a catalyst for organizational cultural change … (helping) to accomplish improvements that long-term care providers have been struggling to achieve for decades.”
Eden, they say, is a journey, not a destination. “As in life, the journey is the important part… It is the dash on the tombstone between the years of birth and death that really matters.
”It seems a journey worth taking as we make homes for our elders that even an Egyptian might admire.
Canada’s home care system is in a crisis being fueled by an aging population and a shortage of home care support workers.
That’s the conclusion being drawn by ongoing research at the University of British Columbia’s Nexus Home Care Research Project, says co-investigator Dr. Joanie Sims-Gould.
“It’s the most rapidly expanding sector in health care,” says Sims-Gould. “We’re going to need to double the number of workers by the end of this decade.”
Home care is often the bridge that allows elderly people to remain in their own homes despite declining health. It can cover a wide range of services that a senior might need to remain independent, from assistance with medical procedures or post-hospital rehabilitation; to personal care such as bathing; and household chores that might include cooking, shopping, or vacuuming.
Some home care services are publicly funded; others are provided by nonprofit groups, and others still are offered by private for-profit companies.
There are no national standards for home care in Canada. Each province sets its own agenda, so the types and cost of services you can access will depend very much on where you live, says Sims-Gould.
The bottom line is that the most successful home care cases have extensive family support. “Without the unpaid assistance of family, home care is not as successful,” she says.
To find out what services are available in your area, contact your community health clinic or talk to your family doctor.