Culturally relevant dementia care system's missing piece, advocates say

Exposing seniors with dementia to the language, food and customs they know can delay the progress of the disease. But advocates say too often, it's not happening in the traditional long-term care setting.

Exposing seniors to the language, food and customs they know can delay the disease's progress

Culturally relevant programming for seniors is difficult to find in long-term care, community advocates in Ottawa say. (Jessica Phelps/Associated Press)

Zeba Taj would often come home sobbing after a shift at the long-term care home in Ottawa where she worked for three years.

Many of the residents there had dementia, and many were from diverse cultural backgrounds. What upset Taj was that the elderly men and women had virtually no access to the languages, food or religious customs they'd been used to their whole lives.

"They don't understand any of their activities. The one thing they know is that this is not their home," said Taj, who quit in 2017. 

Once, she had to insist to her supervisor that a Muslim resident who had dementia not be fed pork. 

"I felt so sad for this person. He doesn't know the language, food is not of his choice and he's completely isolated," said Taj, who now runs programming for seniors at the non-profit Social Planning Council of Ottawa (SPCO).

Changing demographics

While Canada is steadily greying — close to one-fifth of the country's population will be over 65 by 2024, according to Statistics Canada — it's also growing increasingly diverse. Yet there is little special consideration within the long-term care system given to seniors with dementia who come from immigrant backgrounds, according to a 2017 report from Carleton University

Families struggle to access resources that fit their specific cultural and religious needs. Doctors often don't speak their language, nor do they always understand the stigma around dementia that exists within some ethnic communities.

If the people who are in a given long-term care facility have no commonality of life experience, it's a hugely isolating place to be.- Dianne Urquhart, Social Planning Council of Ottawa

Close to 70 per cent of residents in long-term care have dementia, according to 2016 report from the Canadian Institute for Health Information. Often, those facilities lack any culturally relevant care: residents aren't served the food they've eaten their whole lives, there's no diverse religious or cultural programming for them, and staff often don't speak their first language.

That can have a real impact on how fast the disease progresses, said Dianne Urquhart, executive director of the SPCO, which runs information sessions and workshops through 26 local cultural community associations to help inform their members about dementia. 

Diane Urquhart, president of the Social Planning Council of Ottawa, is pictured at city hall in 2017. (Laura Osman/CBC )

Dementia patients often revert to their first language and find comfort in the familiar, like food or music, Urquhart said, and culturally focused care can actually help delay the progression of the disease. But without it, their health can deteriorate with astounding speed.

"If the people who are in a given long-term care facility have no commonality of life experience, it's a hugely isolating place to be," Urquhart said.

Community associations are often the first place those from immigrant communities go for support or information, Taj said. 

"There's a lot of misconceptions attached to dementia, especially with multicultural seniors," she said. "This is why I highly recommend community groups provide education to seniors, family members and caregivers."

Search for new funding underway

The Indo-Canadian Community Centre (ICCC) in Nepean is among the community organizations participating in the SPCO's sessions on how to support seniors with dementia.

Anil Sukhija, chair of the seniors program at the ICCC, said the group has been receiving funding for the initiative through the Ontario Trillium Foundation.

"But the funding is going to stop next month. We started this as a pilot project," Sukhija explained, adding the ICCC plans to apply for more funding to extend the pilot project, which has now gone online due to the coronavirus pandemic.

The Ontario government has launched an independent commission into why COVID-19 crippled the province's long-term care facilities, killing more than 1,800 residents. 2:05

Le Phan, a board member at the Vietnamese Canadian Community of Ottawa, believes the SPCO webinars have been extremely helpful in giving people within his community a forum for discussing aging and dementia care.

"They don't have an opportunity to talk about it," Phan said. "Because of the shame sometimes, they don't want to tell everyone about this sickness. Everyone is hiding this. But I tell them, you have to talk about it, because the problem will get worse."

Urquhart believes it's now time to take those gains and apply them to the long-term care sector.

"[Long-term care homes] have very constrained parameters in which they are operating, and I think we've seen through COVID-19 some of those fault lines," she said. "You actually have to invest in aging and dementia-friendly communities."

In an email to CBC News, the Ministry of Long-Term Care said the Residents' Bill of Rights within provincial law stipulates cultural needs must be given "reasonable assistance" and be "respected and promoted." 

Long-term care homes in the province must allow seniors to pursue their spiritual needs, and some homes self-identify as catering to a particular religion, the ministry said.

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