Dementia sufferers can get lost in cultural divide
April 1, 2010
Jennifer Brown
SPECIAL TO THE STAR
Noor Din didn’t recognize the signs when his mother Amtul developed Alzheimer’s three years ago, even though he instinctively knew something was wrong.
“She was never happy and she complained about things and developed different habits,” recalls Din, a successful engineer who was busy raising his family in Woodbridge when his mother started demonstrating signs of early dementia.
“She had a special spoon she always used and she wouldn’t eat anything until she found that particular spoon. Sometimes it was quite frustrating for us that she wouldn’t listen to us and she showed behaviour we never saw from our mom before. At that time we were not aware of what Alzheimer’s was and no one pointed out to us how to handle people with Alzheimer’s or dementia.”
Din took his mother to see her family doctor and later to a specialist at a large Toronto hospital, but it wasn’t until a return visit in November, 2006 to her native Pakistan that she was diagnosed with Alzheimer’s disease. She stayed there then and was taken care of by family before dying last October.
Din, who came to Canada in 1990, says he feels he was luckier than many other immigrants who struggle to care for a loved one with Alzheimer’s. He speaks English well, has had success in this country and was able to take time away from his job to take his mother to doctor’s appointments and care for her when she was living here.
But for many new Canadians, a lack of understanding about what Alzheimer’s is and how to find help can lead to crisis situations in many families, especially if having a mental illness is also viewed as bringing stigma to the family, as it is in some other cultures.
“A new immigrant has so many other priorities in their family life,” says Din. “They have jobs, they’re settling in and bringing up kids with all the issues that the kids are going through because of cultural clashes.
“Understanding dementia and Alzheimer’s becomes low on the priority list because it’s not life threatening. Therefore, everyone suffers because they become the sole caregivers with no help,” says Din who is also executive director of Human Endeavour, a non-profit organization that provides social services, including educational programs for seniors in the South Asian community of central York Region. The program is called Integrating Communities: Wellness and Prevention.
The organization has a broad focus that looks at issues of isolation and depression — problems seniors new to the country often suffer from because they feel removed from their cultural comfort zone. People with dementia may also suffer from depression.
“We did a small survey of a group of 25 seniors and they had heard of Alzheimer’s, but didn’t know what it was,” says Din.
The goal of educating new Canadians about the disease and other issues around aging is to prepare the whole family, should they need to draw on help in the future.
“We want to make sure that what we went through as a small family with two kids, and with us working, that no one else has to go through that,” says Din. “If, as a caregiver, you don’t have enough education it can become a nightmare to handle.”
Din’s mother’s condition eventually became quite severe — she began wandering to a nearby park and would forget where her home was.
“She always wanted to go to the park — in the 12 years she spent with me here she always went to the park. But in the last year (she was living in Canada), she didn’t recognize the house and would just keep going past it,” he recalls.
Too often, Din says people who are not aware of the signs of Alzheimer’s assume that symptoms are simply age-related. There can also be a stigma attached to the disease in some cultures.
Educating multicultural communities about the disease has become a recent focus for Alzheimer societies in the Greater Toronto Area since they realized the people asking for help did not reflect the true multicultural make up of the communities they were serving.
“We realized we were not seeing Hamilton’s diversity coming through our doors,” says Anne Swift, First Link co-ordinator with the Alzheimer Society of Hamilton and Halton. “People don’t want to talk about it — there are a lot of taboos and it is very challenging to get the resources to them.”
It prompted the society to re-evaluate how it was delivering services and to seek input from its multicultural community.
Chantal Mudahogora, a counsellor with the Hamilton society, is from Rwanda and speaks French. She now has a caseload of about 40 families in the area that she works with to educate and help understand the disease and the community services available.
“It takes a lot of energy to go out there and tell them what the alternatives are — they don’t reach out to search and find out,” she says. “Sometimes we have to go back to see a family many times before they accept help.”
Openly discussing Alzheimer’s disease is also a concern in the Chinese community.
Too often, caregivers are also in denial of what their loved one is suffering from, says Elaine Cheung, a Chinese-language social worker with the Alzheimer Society of York Region. She says families are often reluctant to ask for help outside the family.
“Until their loved one does something strange, like put food in a closet, they don’t realize they should go to the doctor, that Alzheimer’s is not just about memory loss,” she says. “The person with dementia might have a whole month of bad days, but even if for an hour the person is quiet and normal, most caregivers will have hope that they will get better.”
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