'Families take care of their own'

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Chandrakanta Das spends every weekday exercising and socializing at India Rainbow, a local day program for seniors. Her English is excellent, but a mild form of Alzheimer's makes the 87-year-old former school principal forgetful, and there is comfort conversing in Hindi, and doing word puzzles in Urdu, the language in which she learned to write.

At first she was reluctant to go, preferring to stay at home where she lives with her son and his family. But those objections soon fell away. "The girls here are very social," she says. "They treat us so nicely."

For her son Aurobindo and his wife, Amrit, the program's success is also a relief: "We know she is in a safe place having fun."

Day programs and nursing homes for immigrants with dementia remain in short supply in Canada, a troubling reality for a disease that makes communication complicated even when caregivers and patients share the same language. With the help of vocal grassroots organizations and a growing pool of doctors, the South Asian and Chinese community have developed some senior services - such as India Rainbow and the multi-purpose Yee Hong Centre for Geriatric Care in the Toronto area.

But in a system already struggling to deal with an aging population, it is remains even harder for immigrant Canadians to find places that care for seniors with dementia by serving cultural appropriate food, accommodating religious beliefs, and most importantly, where staff know their language.

"You can't have one-size-fits-all programs. In a multicultural society, you have to adapt to culturally diverse groups," says Jane Barratt, secretary-general of the International Federation on Aging. "You have to remember that immigrants are aging in a foreign culture. That brings with it a whole other set of issues."

People with Alzheimer's face a social stigma across Canada, but this in exacerbated in communities with little exposure to the disease though firsthand experience or media campaigns. One study found that the South Asian population in Toronto often puts off getting help for a senior family member well after symptoms appears, and even after a diagnosis, doesn't have a clear understanding of the disease. "Someone thought their father was just being mean - they didn't know why he was saying such awful things," says Sharon Koehn, a Vancouver researcher at the Centre For Healthy Aging at Providence, who worked on the study.

Physicians may also overlook the symptoms of dementia, for a variety of reasons. According to her research, Chinese doctors often dismissed the symptoms of dementia even when presented with concerns from family members. And doctors are the most likely to miss a diagnosis if the patient is from a different culture. (Dr. Koehn also points out that there is no clear evidence that the various forms of dementia occur in lower rates in certain immigrant populations - the research is inconsistent, and it may be that they are diagnosed less often.)

"Different cultural groups deal with the problem of dementia in different ways," says Dr. Joel Sadavoy, geriatric psychiatrist with The Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer Support and Training at Mount Sinai Hospital in Toronto, "Take the Chinese community: There is a tendency there to manage problems within the family structure and a stigma about reaching out to the health-care system for help. What happens is that families deal with the issue internally until they reach a breaking point and there is a crisis."

"We hear it time and again: Families take care of their own," Dr. Koehn says. "But whether or not it's practical here is another matter. And we know from speaking to seniors that it's not - that many are at home getting inadequate care because families have to work."

This reluctance to seek help also makes culturally sensitive nursing homes and programs such as India Rainbow essential - both to relieve family burdens and improve quality of life for patients. Dementia patients typically lose their short-term memory, and regress into their childhood, which often means that even they have acquired a second language later in life, they often struggle to recall it. This can create a significant barrier both to treatment and testing: For instance, Dr. Koehn says, one floor at Vancouver's Mount Saint Joseph Hospital has almost all Chinese patients with dementia, and while the staff do their best, most speak just a smattering words in their patients' language. Dr. Koehn is about to start a pilot project in which a translator works on the floor to bring patient concerns to doctors more readily.

At India Rainbow, the number of seniors using the various programs has quadrupled in the past 10 years - there are now approximately 25 people participating each day in the seniors program, and another 700 seniors in the wellness sessions held throughout the year. But ideally, says executive director Kitty Chadda, nursing homes would begin to establish culturally sensitive programs or floors within their existing facilities, so that residents can mingle while still being exposed to their own culture.

Without those options at nursing homes, she says, "people don't last long there. It's the isolation. The language is not there. The food is not there. That age group would like to live with their kids forever. They see it as being put away."

At the Yee Hong Centre, which now runs several residential locations totalling more than 800 beds, as well as day programs and outreach for caregivers, the participants discuss their old memories of Chinese New Year, with someone to accompany them in their own language as their memories dissolve back toward childhood. As in India Rainbow, they savour the meals and flavours they have always known.

Says Kwong Liu, the centre's director of social services: "We don't give them wine and cheese. They want to taste a really good cup of tea."