Care homes lacking for aging immigrants
Culturally relevant care seen as critical in helping seniors with dementia
At home, Josh Suresh’s aging mother, Indrani, enjoyed meals like string hoppers, a rice noodle dish common in Sri Lanka where she grew up.
Other South Indian foods like idli and dosa were staples on her table.
But after being diagnosed with dementia and having to move into a long-term-care home in Scarborough in 2015, all those comforts were gone. Instead, Indrani was faced with dishes like boiled potatoes and pasta.
She wouldn’t touch them. She stopped eating altogether, losing 40 pounds. She also reverted to communication solely in her first language: Tamil.
Though the nurses at the home were “excellent,” said Suresh, they couldn’t communicate with Indrani, and were not equipped with the tools to help her. “She went into a shell.”
Shutting off seniors from their cultural needs can have a huge impact on their well-being, say experts who urge that any post-pandemic reforms of long-term care include not only the safety, staffing and physical space of these homes, but also ensure the elderly are treated like human beings. That includes incorporating all aspects of who they truly are, like language and culture.
COVID-19 has devastated Ontario’s long-term-care homes, exposing gaps in care and leaving 3,714 residents and 11 staff dead. And as that toll rises in this second wave, families and advocates are demanding changes to a flawed system. In an increasingly diverse city like Toronto, that includes ensuring robust, culturally relevant care.
“In rebuilding our long-term care, I believe the cultural pieces should be built into the core conversation and core principles,” said Seong-gee Um, a researcher at the Wellesley Institute, a Toronto-based research and policy non-profit organization. “Evidence confirms that the provision of culturally and linguistically specific care has a strong positive association with people’s health outcomes and well-being outcomes.
“It’s not something that’s nice to have. It’s something that should be required.”
The demand is there: The wait time for a bed in cultural or religious homes in Toronto is about 16 months on average compared to just eight months for all public long-term-care homes in general, according to the most recent data available from 2017.
According to a Wellesley Institute report last fall, out of the 20 long-term-care homes in the province with the longest wait times, 12 were ethnospecific or religious homes. And five homes with the longest wait times in the province are mostly designated for Chinese Canadians and have a median wait time of two to four years.
Currently, within the five Local Health Integration Networks (LHIN) that cover Greater Toronto, there are only 33 homes with a cultural or religious designation out of the 200 in total. In the Mississauga Halton LHIN, alone, there are only three designated ethnocultural homes, catering to Italian, Lithuanian and Slovenian seniors, and no home for South Asians, despite that group making up close to a quarter of the population of Mississauga, and being the largest visible minority group in the city as of 2016.
For Suresh, a home for South Asian Canadians would have been his first choice, but that wasn’t available, as few homes geared for people of that background exist in the GTA.
“It’s a death sentence sending seniors to an environment they are not used to, with an environment they can’t relate to, people they can’t speak to, and people that can’t understand their cultural sensitivities,” said Suresh.
But Suresh couldn’t bring Indrani home. Her dementia had reached the point where there were concerns she’d slip out the front door of her Pickering home and become lost. Though small and frail, Indrani was also having violent outbursts.
She and her husband moved to Canada from Sri Lanka with a then-17-year-old Suresh and their three other children in 1984. After decades in Canada, Suresh said it was painful to see her live out her final years in a long-term-care environment that caused her to withdraw. His mother died in August 2019.
“It’s a disaster ... that’s why these culturally based homes are critical.”
Ontario’s Long-Term Care Homes Act, which replaced the Nursing Homes Act in 2007, states that every resident has a right to a plan of care that can include medical, nursing, personal support, dietary, recreational, social, religious and spiritual needs.
When admitting new residents, all licensed long-termcare homes in the province are required to consider a senior’s preferences around ethnic, cultural and other factors. Placement co-ordinators with a region’s Local Health Integration Network must take these factors into account, the Ministry of Long-Term Care said in an emailed statement to the Star.
There are almost 39,000 people waiting for long-term care in Ontario, the ministry said, and the province is committed to creating 30,000 new beds. “Additional consideration” has gone to ensuring those homes reflect “culturally specific care,” the ministry added.
The ministry did not specify how many beds were for cultural care. Instead, the province is leaving it to LHINs to decide if they are serving diverse needs.
There is growing cultural and linguistic diversity amid the aging population in the country, overall, not just specific regions.
For most of the 20th century, Canadian immigration policy was largely focused on attracting white Europeans and was discriminatory toward people of colour. In 1976, a new immigration act codified non-discrimination, allowing a new wave of newcomers to arrive.
This means the aging population includes more people of colour now than ever before. Toronto saw a 94 per cent increase in racialized seniors from 2006-2016, compared to a 27 per cent increase in non-racialized seniors during that same period, according to an October 2020 report from the Wellesley Institute that examined census data.
A 2017 report by the institute also found that close to half of Toronto’s seniors speak a first language that is not English or French.
Dementia patients often revert to early memories, like their childhood and first language. Helping them engage with those aspects can keep them stimulated, said Dr. Samir Sinha, director of geriatrics at Mount Sinai and the University Health Network Hospitals.
According to the Ontario Long Term Care Association, 64 per cent of nursing home residents in 2019 were diagnosed with dementia and 90 per cent had some form of cognitive impairment.
Through her research, Um says immigrant communities often try to care for elderly parents as long as possible — as they are able to use neighbourhood resources and community associations with specific cultural programming.
“But when they are placed in a long-term-care home when the language support is very minimal, it creates another barrier to receive good quality care,” she said.
In the Toronto area, the number of culturally specific homes is also sparse. Out of the 36 homes the Toronto Central Local Integration Network (TCLIN) provides funding for, 11 have a cultural and religious designation. Those homes have cultural settings for those of Jewish and Catholic faiths, along with homes specifically for Greek, Ukrainian, Polish, Chinese and Korean Canadians. Toronto Central does not encompass the entire city.
Nine other homes have a unit that has a cultural designation, said the network in a statement.
For the TCLIN, the average wait times as of January for a bed are over three years for a basic room that usually accommodates two residents, and just over two and a half years for a private room.
Melody Lo says until a spot opened up at the Yee Hong Centre in Scarborough, she, her father and her two sisters cared for their mother full-time.
Yee Hong long-term-care homes, launched in 1994, provide culturally specific care for Chinese, Japanese and South Asian Canadians in the Toronto area, providing 805 beds.
Lo’s mother, Elsie, moved to Canada from Hong Kong in 1974 and settled in Scarborough with her husband to raise their daughters. But in 2004, Elsie suffered a series of massive strokes following surgery to remove a brain tumour.
Elsie, who was only 53 at the time, could barely speak, walk or see and would need care for the rest of her life.
“My mom and I were very close. She’s always put family first, even when she was sick,” said Lo. “So we didn’t want to give up on her.”
Touring other long-term-care homes, Lo said it was clear the family could not let their mother live there. As Chinese Canadians, they did not want her to stay in a place devoid of culture, with food she wasn’t used to, and without the Cantonese language available to her. The strokes had caused her to lose her ability to speak English, said Lo. When a room opened up at Yee Hong in 2008, they were relieved, she said. Dishes her mom had been making her whole life like congee, noodles, fresh fish and red bean soup were readily available.
Lo says her family was fortunate Elsie was able to spend so many years at Yee Hong before she died in 2015. Many families are still on the wait list.
“When I started Yee Hong, there were only 300 people on the wait list. Now there are 5,000 to 6,000,” said Dr. Joseph Wong, founder of Yee Hong.
The wait list takes on average about six to 10 years, said Wong.
Yee Hong is receiving more funding from Ontario to open another 800 beds for three new nursing homes that will also accommodate South Asian and Vietnamese Canadian seniors. But that will cost close to $330 million and Yee Hong has been tasked with raising about $90 million for the new builds, said Wong.
It’s not enough, and it will likely take about seven to10 years to build the first home, he said.
For Suresh, if there was a home for Tamil-speaking seniors that’s where he would have sent his mom, he said.
“In the next 10 or 20 years, the demand is going to go up exponentially,” he said. “You can’t just put seniors in a place where they are totally lost, you want to try to minimize the impact as much as possible.”