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Emotions: more of a focus in dementia care

By Kevin Spurgaitis

Wandering, hallucinations—and anxiety-fuelled outbursts associated with sundown syndrome—are the most common dementia behaviours. And they can be serious sources of stress for both long-term care residents and personal support workers (PSWs) alike.

But when it comes to engaging with people living with dementia, a new philosophy and practice is emerging in Canada. What is being called emotion-focused care is allowing those with the neurodegenerative disorder—and their caregivers—to connect with each other, while alleviating the boredom, loneliness and loss of purpose that can be felt during a person’s final years. Its success to date in Canada and other parts of the world has prompted seniors organizations to push legislators to make emotion-focused care the norm, instead of the exception, in the country.

The Butterfly Model

Developed by Dr. David Sheard of UK-based Dementia Care Matters, the Butterfly Household Model of Care, which is now more than 20 years old, is the most widely known emotion-focused program. Senior health care experts have gone as far as dubbing the Butterfly Model—along with the US-inspired Green House Project and the Eden Alternative—as “transformative dementia care.” It is centred around the notion that, for people living with dementia, feelings matter most of all. These individuals have the potential to thrive in a nurturing environment that prioritizes empathy, warmth and friendship, and where those living and working alongside each other “know how to be person-centred together,” says Sheard. By focusing on the social and emotional happiness of individuals in this way, the model departs from traditional nursing home care—one dominated by documentation, schedules and routines.

Instead of larger units with 25 or more beds, emotion-focused homes are broken into smaller, more comfortable living spaces for people with moderate and severe dementia. And in order to help residents navigate the hallways, walls are painted in neon green, tangerine or other vibrant colours. Also crucial to success is what is called “the importance of care relationships,” in which the interests of each individual living in the home are embraced—not to mention the amount of time staff are given to develop those same relationships with residents.

Whenever a resident becomes agitated and begins to pace around the care home, the first step as part of emotion-focused care is to calm the resident down by removing them from the source of the agitation. Then, another activity must be found in order to keep the resident busy. Once their agitation has gone altogether, PSWs can come up with ways to prevent the same situation from recurring.

Emotion-focused care is not entirely for residents. It is a coping method for PSWs experiencing anger, anxiety, shame or guilt—the feelings brought on by caring for residents living with dementia.

Growing impact

The World Health Organization now estimates that around 50 million people around the world are living with dementia, including Alzheimer’s disease. Here, the latest figures from Statistics Canada indicate that more than 402,000 people aged 65 years and older have dementia, with about two-thirds of cases occurring in women.

The Butterfly Model is currently used in more than 20 homes in the UK, four in Australia and one in the US. As many as five seniors and nursing homes have adopted the practice in Alberta. And after a year-long pilot project, Mississauga’s Malton Village Long Term Care Centre recently became the first Butterfly Care Home in Ontario. Residents in the centre’s Redstone dementia unit no longer spend their days watching television. Instead, they play songs from the 1940s and 1950s on the piano, while others sing along. Residents also enjoy writing, practicing golf swings and preparing their own midday snacks, among other activities. Meanwhile, administrators and staff take the time to talk and play games with residents, forming much-needed friendships. Because of the success of the Butterfly Model here, a second dementia unit is expected to be added to Malton Village.

The program is now being embraced by other Ontario operators in Ottawa, Brampton, Kitchener, London and St. Catharines. Ottawa’s Glebe Centre, which is a not-for-profit home, plans to incorporate the Butterfly Model into its dementia unit later this year. Up until now, the 32 residents living in the unit have reportedly had “little to do” outside of regularly scheduled events. Moving forward, though, they will be able to spend more quality time—and form deeper connections—with PSWs and nursing staff. The program might even help the Glebe Centre to attract and keep employees, according to management. A shortage of PSWs is an ongoing issue in many regions across Canada.

Blueprint for Canada

According to a recent report commissioned by Toronto City Council, the city’s 10 long-term care homes could also benefit from emotion-focused care models—and councillors seem eager to implement the strategy. In April, councillors and Mayor John Tory voted unanimously for a plan to provide emotion-focused care, such as the Butterfly Model, Eden Alternative or the Green House Project, to 2,600 residents in city-run nursing homes.

“We have a choice, either to warehouse our seniors and under-resource, under-staff and really just manage them as patients, or to provide the kind of care that really addresses their needs and improves their quality of life,” said Councillor Josh Matlow, who
co-chairs the Toronto Seniors Strategy Subcommittee.

In recent years, seniors organizations have lobbied governments for emotion-focused programs. One of Canada’s largest seniors lobby groups, CARP (the Canadian Association for Retired Persons), is urging federal and provincial governments to transform long-term care with the Butterfly Model or others like it. AdvantAge Ontario and the Ontario Long Term Care Association, which together represent the province’s 628 nursing homes caring for 78,000 people, have also asked the provincial government to fund programs that put residents’ interests above all else.

Lisa Levin, CEO of AdvantAge Ontario, recently told the Toronto Star that her own personal experiences with a family member living with dementia have shown her how “emotions remain intact after so many other things have slipped away.” Nevertheless, current regulations do not allow for flexible staffing or for creative approaches to programming, making it difficult for
homes to focus on those in their care. And although regulators did not raise any concerns in their annual inspection of Malton Village during its year piloting the Butterfly Model, both AdvantAge Ontario and the Ontario Long Term Care Association still worry that operators will face violations within Ontario’s strict regulatory system.

For emotion-focused programs to be successful, staffing will need to be increased. The Canadian Union of Public Employees (CUPE) points to Malton Village, which employed additional workers for its pilot and, as the model is expanded to more dementia units, plans to hire 14 extra staff members.

Canada is at a critical crossroad

Our population is aging and dementia rates continue to rise. In fact, it is estimated that by 2031, our total annual health care costs for dementia will be more than $16 billion; double from
two decades ago.

With this in mind, senior health care experts say that there needs to be a seismic shift in the way long-term care homes are thought of in Canada, along with a brand new culture of care.
“The scourge of dementia is old news,” one long-term care operator said during the launch of a Butterfly program in St. Catharines. “Now is the time to do something about it.”ϖ

Kevin Spurgaitis has been employed in the Canadian and overseas media for nearly two decades and has written in-depth feature articles on public health, justice and ethics issues. He lives in Toronto.

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