Mary-Ann Billington is never sure which language her mother will use – as if the 85-year-old's brain, stricken with Alzheimer’s disease, has jumbled her words. Ask her a question in Dutch, the language of her childhood, and she might answer in English, which she learned fluently as an adult. She mashes Dutch and English into one sentence, or makes up words altogether. She gets frustrated when she isn’t understood.
“We would just nod and smile if we didn’t understand what she was saying,” said Ms. Billington, a researcher with Statistics Canada in London, Ont.
But imagine that in an already darkening world, where dementia has made the familiar strange, the people wheeling you to the dining room or helping you into the bathtub speak words that you don’t recognize. Dementia is already an isolating disorder. But it becomes even more complicated because patients, with their memories collapsing back to childhood, often lose their ability to speak English if they learned the language later in life. In a nation where the incidence of dementia is expected to double in the next 30 years to one million people – and in which 20 per cent of an aging population has a mother tongue other than English or French – that means a huge strain on families looking for good care, and will require a radical shift in the country’s health-care services.
Language barriers for dementia patients “are not taken very seriously at all levels of society,” said Jeff Small, a linguistics professor at the University of British Columbia. “Do we just feed people, toilet them, make sure they have clean clothes? Is that the extent we owe them as a society?”
Even in major cities such as Toronto and Vancouver, beds in nursing homes in which staff speak minority languages are in short supply, and families looking for home-care support are often expected to take whatever is available. Of the more than 600 long-term-care homes in Ontario, about 80 have some form of culturally specific programming. Some may offer ethnic food, while others have floors designed for people of a specific ethnicity, and a few provide services exclusively for one culture.
There are signs of progress: government health agencies are working to hire staff who speak a variety of languages, and funding in some provinces has supported facilities such as the Rose of Sharon residence, which opened last year in Toronto to serve Korean seniors.
But astonishing gaps remain: Of the 17 homes with beds for ethnic groups, none serve the city’s growing South Asian community. Francophones in the GTA – who number about 80,000 – have access to only 37 spaces guaranteed to have French-speaking staff. Across the country, in smaller cities, the situation is far worse for minority groups. But even Surrey, B.C., a region with a substantial South Asian population, has only one assisted-living seniors’ residence for that demographic – and its 72 spaces are not designed for patients suffering from dementia.
“People are dumped into regular-care homes where staff are not bilingual, and their lives are cut short,” said Charan Gill, chief executive officer of the Progressive Intercultural Community Services Society, which partnered with the provincial government to build the existing residence and has been campaigning for a dementia-specific facility.
A lack of care options, Mr. Gill suggests, means that families are keeping elderly parents home longer than may be safe, sometimes leaving them alone when they need supervision. Some agitated patients in care facilities may have to be placed in restraints because language barriers prevent staff from understanding the reasons for their distress, according to Serena Tin, a social worker at the Yee Hong Centre, a nursing home for Chinese seniors in the Toronto area. “What happens when they are scared?” she said. “What happens when they have a bad dream? Who is going to help them? They need someone to comfort them.”
