Joyce Chan suspected something was wrong with her husband when he started losing his way to their local Tim Hortons five years ago.
“Instead of walking south, he’d walk north and get lost. I would have to go out and look for him,” Chan, 77, recalls, about her 82-year-old husband, Peter. She says he lost his way one day when they decided to go out for lunch. “We didn’t know where he was, but he had walked home by himself. He fell down quite a few times.”
Peter was diagnosed with Alzheimer’s disease, a type of dementia with symptoms including a decline in memory, reasoning and communication skills and a gradual loss in ability to carry out daily activities.
Over 700,000 Canadians live with Alzheimer’s and other dementias. According to the Alzheimer Society of Canada, for every person with the disease, two or more family members provide care.
The diagnosis has taken a toll on Chan, who is Peter’s main caregiver. He has been on a waiting list for the last year to receive long-term care. The couple immigrated to Canada 48 years ago and have one adult son whom they seldom lean on for support because of his busy schedule.
“It’s not easy. Back home in Hong Kong, we have lots of relatives … I can call them [for support],” says Chan. “We have been here so long and we have friends, but everyone has their own family and their own problems.”
Reverting to native language, reliving trauma
Sharon Tong, the support and education coordinator at the Vancouver Chinese Resource Centre (VCRC), says many of the seniors she works with came to Canada through sponsorship and this impacts the dynamic they have with their children.
Elderly parents often insist they can manage themselves and are not forthcoming with their children about their needs, she explains.
“They don’t want to put an extra burden on their children, but they don’t have a social network.”
“They don’t want to put an extra burden on their children, but they don’t have a social network, because a lot of their social networks are still in their hometown,” she says.
The VCRC is an initiative of the Alzheimer Society of B.C. that began 20 years ago. The centre provides educational workshops in Cantonese and Mandarin as well as personal support and support groups for people with dementia and caregivers.
It has filled a gap for people who struggle to find services in their native language.
Ekta Hattangady, a social worker at the Alzheimer Society of Toronto, says losing the ability to speak English is a unique challenge for immigrants with dementia.
“A lot of people revert to their first language,” Hattangady says. “The services that are available to them last year are no longer suitable to them because they no longer speak English.”
The Alzheimer Society offers information in various languages as well as counselling with an interpreter. The most commonly requested languages are Italian, Portuguese, Greek, Arabic and Cantonese.
Another challenge with declining memory is that people recall old memories, which can be especially difficult if they have suffered trauma.
To deal with this trauma, Hattangady sometimes recommends attending programs or listening to familiar music, which has proven to decrease isolation and boost the cognitive processes of patients.
“A lot of people revert to their first language.”
Accessing culturally specific services
For people with dementia who are in need of long-term care, dietary restrictions such as eating halal or kosher food can also be a concern.
This is where places like the Yee Hong Centre for Geriatric Care come in. The centre was established in 1994 to serve the Chinese community. It now has four locations in the Greater Toronto Area serving several communities, including a dedicated unit for Japanese patients and another for South Asians.
The Yee Hong Centre incorporates culture in all aspects of service delivery, from the food it serves to the staff on site, who speak the same languages as the patients.
“When [patients] talk about home, they are talking about home in a small town in eastern China or a village in India,” says Yee Hong’s CEO Eric Hong. “They may not realize they’re in Canada. Our programs cater to that so they feel they’re in familiar grounds and don’t get anxious.” Cultural music and newspapers at the centre contribute to this atmosphere, he adds.
Hong explains that the Centre also provides health care that is conscious of people’s experiences and expectations.
“Even if [immigrants] get services here, sometimes they are not tuned into what a person of colour may want.”
“Health-care [in Canada] isn’t as straightforward as people expect it to be. Even if [immigrants] get services here, sometimes they are not tuned into what a person of colour may want.”
This includes addressing different perspectives on what constitutes healthy behaviour, and the relationship between a health practitioner and patient, he explains.
Caregivers face challenges also
Isolation is another common experience of people dealing with dementia and their caregivers.
Chan shares the difficulty in caring for her husband who she says has not been the same since his dementia has progressed. She says Peter was sharp, intelligent and had a decent build, but is now skinny, weak and needs help with tasks like using the microwave.
Although he’s a quiet person who doesn’t converse with her much, Chan says when he gets sick, he screams at night and it’s tough to handle on her own.
“I count my blessings every day,” she shares. “I like to play Sudoku and to watch TV and to listen to music, otherwise I will be very depressed. I’ve got to keep up my spirits. I have to set an example for my husband. If I don’t think positive, he’ll be worse.”
Editor’s Note: Joyce and Peter Chan are pseudonyms as the couple did not want to be identified.