On a bright and breezy spring morning, 90-year-old Xing Jun Ma packs up her exercise props. She assembles a water bottle, a retractable stainless-steel sword and a bright red tai chi Kung Fu fan. She puts on her rosy corduroy hat and heads to MacLean Park in Strathcona, a Vancouver neighbourhood that borders Chinatown and the Downtown Eastside. It’s a 15-minute walk from her home.
Before she gets to the park, some of her friends are already there, chatting, stretching and getting ready for today’s tai chi session. When Ma sees them from a distance, she waves happily and smiles.
They have been doing tai chi together for over 20 years now.
“I do tai chi every morning with my friends here,” says Ma in Mandarin. “I have lots of friends here, we sing and dance and tell stories, I like being around them.”
As the music starts to play, Ma squats gently with hands moving from side to side, each posture flowing into the next without pause. Then a light reflection flashes from the blade of her sword as she points it to the sky.
The park is a haven for Ma and her friends amidst the vibrant and densely packed Downtown Eastside. Due to limited public space, busy sidewalks and heavy vehicle traffic, the area hosts some of the most dangerous intersections for pedestrians. The neighbourhood’s unpredictable traffic can be risky for local residents.
Ma, who lives with dementia, lives in nearby Chinatown.
When she and her husband moved to Canada in the early 1980s, they lived in Alberta before they moved to Vancouver’s Chinatown. They came after they retired to reunite with her relatives. Ma worked as a nanny in her retirement years for extra money until she was hit by a car that severely injured her around the year 2000.
“I was more dead than alive,” Ma recalls. She shows me the deep scar on her head, covered by her hat.
“I recovered from it quite well,” she says. “But my memory is getting worse now. I can barely remember something that happened a few minutes ago.”
Ma believes the accident contributed to her memory loss. Years later, in fall 2021, she was diagnosed with dementia.
Dementia is an umbrella term for a set of symptoms that are caused by cognitive decline. People with dementia might experience memory loss, difficulties with thinking, problem-solving and language, and changes in mood or behaviours.
As of today, over 500,000 Canadians are living with dementia. That number is expected to increase by 82.4 per cent by 2030.
Dementia affects each person in a different way. Each person’s experience is shaped by the type of dementia they have, other health conditions and the state of their cognitive functioning before becoming ill.
Some might find themselves having trouble remembering recent events and people they have met in the recent past. Others might experience wandering and getting lost in familiar places. Ultimately, the forgetfulness will lead to individuals living with dementia feeling insecure and losing confidence in themselves and their abilities.
Many people living with dementia in Canada are older immigrants from racialized communities. Their demographic suggests a higher prevalence of dementia, and they also face unique obstacles, including undiagnosed dementia, depressive symptoms, economic constraints and social isolation.
Although there is currently no treatment available to cure dementia, medical treatments (four medications approved by Health Canada) and care interventions still can effectively treat symptoms, support overall function and improve the quality of life of individuals living with dementia.
Dementia care is the frontline intervention that contributes to a person’s well-being, autonomy and identity, where culturally sensitive support becomes vital for immigrant seniors living with dementia to achieve better health-care outcomes.
‘Diversity is a fact, and inclusion is an option’
The first step to offering culturally inclusive dementia support is to make sure that the spectrum of care including self-assessment, treatment options and tips for maintaining a healthy brain are made accessible to people living with dementia.
But it’s also important to note that translated materials alone can’t do the job of culturally sensitive support by itself.
Immigrant seniors who are experiencing language and cultural barriers are usually less inclined to reach out for help.
“Providing information in languages people can understand is only the beginning,” says Roger Wong, the vice dean of education in the UBC faculty of medicine. Wong has spent much of his career serving older adults, including those living with dementia.
“For those who grew up outside of Canada, their values, attitudes and health beliefs have been formed for decades prior to them coming to Canada, and we need to respect those things when we’re working with them,” said Wong.
When I asked Ma what kind of support she’d like to live a healthier and more enhanced life, she said she didn’t feel she needed much help, and that others required more help than her.
While part of that is true — she is healthy and is content with her life — it is also true that social and community support has been crucial to her.
Additionally, Ma’s sentiments about not needing support can be commonly heard from Chinese seniors whose culture values stoicism, endurance and soldiering through hardships.
One way to provide support while respecting these seniors’ attitudes and self-conceptions is through community outreach, Wong says. A good way to start is through “local organization, local neighbourhood, local community or church community,” and do it in a way that is “culturally sensitive, effective and more importantly, meaningful,” said Wong.
One example of this in Vancouver is the Yarrow Intergenerational Society for Justice, which has been an important local organization for low-income immigrant seniors in Chinatown and the Downtown Eastside. They offer social and recreational intergenerational activities, biweekly grocery deliveries and leadership opportunities for seniors to influence programming and speak on panels to share their lived experiences.
Going to medical appointments or exams can be a stressful experience for immigrant seniors, where language barriers might lead to miscommunication and pose challenges in terms of the quality of health care and their safety, so Yarrow Society also provides translated support for medical appointments and documentation of medical advice.
“They definitely need community support and more robust home support that’s free and accessible, as well as the trained staff who speaks their languages,” says Beverly Ho, the operations manager of Yarrow Society.
Ho has become an important part of Ma’s life since 2015. They met at several community meetings that were advocating for changes the seniors wanted to see in their neighbourhood, and their relationship developed naturally over time. Ho visits Ma from time to time, takes her to medical appointments and joins her morning tai chi sessions.
“I’m very grateful for our relationship. I feel like it’s pretty special,” says Ho.
“She’s like my grandma in some ways, but also like a friend. She’s very knowledgeable, optimistic and outgoing.”
“Diversity is a fact, and inclusion is an option,” says Queenie Choo, the CEO of S.U.C.C.E.S.S., which offers programs and services that promote the belonging, wellness and independence of newcomers to Canada. “So living in a culturally diverse community like Vancouver’s Lower Mainland, it’s vitally important to reach out to the population where they might be hard to reach for one.”
S.U.C.C.E.S.S. recently launched a culturally appropriate dementia awareness program for immigrant communities, delivered in multiple languages including Mandarin Chinese, Farsi, English and French.
The program offers information on brain health, risk factors for dementia, symptoms of dementia and ways to reduce the risk of developing dementia. The program has helped to make information accessible and easy to understand for immigrant communities.
“This is a program where people are very interested not just for themselves, but also for understanding how to interact with and support their loved ones with dementia,” says Choo.
“For the long run, we are hoping to increase the knowledge of dementia and brain health for the population whose English is limited,” says Choo.
The importance of ‘patient partners’ in research
Meanwhile, experts and researchers are finding creative ways to support people living with dementia using technologies and innovative methods.
Gregorio has been a “patient partner,” or a person who shares their lived experiences and work with students to help them better understand their research area, with the Innovation in Dementia and Aging lab, since 2020.
The IDEA lab collaborates with patient partners like Gregorio to understand how technology and environment impact the care experience of people living with dementia.
As an immigrant who moved from the Philippines in the early 1970s, Gregorio’s lived experience provided a critical perspective on how dementia affects people from racialized groups.
“Race and ethnicity are sometimes not considered in the treatment and care of people living with dementia in North America," Gregorio says. "Some of the processes are not geared towards people with different ethnic backgrounds.”
Gregorio’s experience is not unique. According to an American Alzheimer organization, almost half of Asian Americans living with dementia believed that medical research is biased against people of colour.
“People will find comfort in something that they feel very familiar with, and it helps to give that person a sense of belonging, a sense of safety,” says Lillian Hung, the founder and head of IDEA lab.
“For example, we are doing a TV program that is specifically designed for people with dementia in a care home, like making dumplings for the Chinese New Year, because regular TV programs might not be relatable or understandable for them.”
Besides the TV program, Hung and her team are working on dozens of projects that incorporate technology into dementia care, such as the Paro Robot that provides emotional and social support for seniors in hospitals, and the What Matters App, which allows family members to upload content including photos, videos, music and audio recordings that staff can use to engage with patients living in hospitals and long-term care homes.
“When we asked residences in long-term care homes about what kind of message would you like to hear, most of them said they just want to hear from their families to see what they’re up to,” says Hung.
“And a very sweet story is that a husband will send a message to his wife every night to tell how much he loves her.”
Planning a city for people with dementia
Back in Chinatown, Xing Jun Ma doesn’t have mobility issues — I had to walk faster than usual when I walked her home — and she hasn’t gotten lost in the neighbourhood that she’s lived in for decades. But other seniors with whom Beverly Ho has worked have raised concerns about the walking environment in the Downtown Eastside. And it’s common for people living with dementia to wander and become lost, and language barriers add complicating layers for people who have trouble reading signs in English.
“Some seniors said that the sidewalks are a bit old and bumpy, and there’s not enough curb cuts for people who use wheelchairs and walking aids,” says Ho. “A few years ago, we were able to secure a meeting with some city planners regarding traffic safety, as some seniors raised concerns about the traffic lights being too short, but it didn’t really go anywhere.”
But there are organizations working to research the issue and offer solutions.
A partnership between the Alzheimer Society of Canada, and those of British Columbia, Saskatchewan, Manitoba and Ontario and the Dementia-Friendly Canada project intends to foster the creation of both dementia-friendly physical and social environments where people living with dementia, their families and care partners feel included and supported.
Part of the project focuses on the built environment and how it could affect mobilities and social participation.
“Sixty per cent of people living with dementia live out in the community,” says Heather Cowie, the national project manager for Dementia-Friendly Canada. “They’re going to their local grocery store, yoga classes, dental appointments.”
“One of our favourite things to do is actually take them on walking interviews, having a person living with dementia walking around with the urban planner and pointing out what doesn’t work in the environment,” she adds.
“Walking interviews often have more of those ‘Aha’ moments for the urban planners to take a step back and work on putting that lens over all the work that they do,” she adds.
“For example, the municipality had just put in some new sidewalks that included dark and light-coloured tiles, and the urban planner has never considered that these darker tiles may look like a hole in the ground to a person living with dementia,” says Cowie.
A group of B.C. researchers funded by the Public Health Agency of Canada and the Alzheimer Society of Canada are currently doing participatory research that uses the same approach to collect data on built environment features in Metro Vancouver.
Habib Chaudhury, a SFU gerontology professor heading up the project, describes what it means to take race and ethnicity into consideration for this research. “If they’re living in an ethnically concentrated area, they’re more likely to be able to access the temple or local grocery stores, but proximity does not guarantee accessibility,” he says.
“It’s about land use, it’s about high density, and it’s about the walkability of the neighbourhood,” he adds. “We need to do a better job as that’s a part of the planning strategies and the municipal responsibility of creating more walkable developments.”
Put most simply, a dementia-friendly built environment is one that ensures people living with dementia can, as Chaudury describes it, “live as independently as possible, and have mobility and participation engagement in the community in an as widespread way as possible.” It means evaluating and improving mobility, facilities and accessibility, such as sidewalks, benches, lighting and public washrooms.
“For example, when I go out of my house, can I go to a grocery store, a doctor’s office, or a bank within a 10-minute walking distance?” asked Chaudhury. “Are there landmarks that help create a distinct environment to prevent people living with dementia from wandering?”
The social environment in a community — including the supports and programs provided by organizations like the Yarrow Intergenerational Society for Justice and S.U.C.C.E.S.S. — is also critical, Chaudhury says.
I joined Ma for the tai chi workout with Ho on a Thursday morning. Ma seemed happy to see young people learning this exercise. We followed and moved while Ma guided us step by step. I realized culturally appropriate support could be as simple as listening.
Ho showed me a zine they created earlier this year, an artistic collection of personal profiles of seniors and youth from Yarrow. Flipping through pages filled with creative artwork that narrates each senior’s personal history, hobbies and their signature dishes, as well as hand-written notes of seniors’ wishes — “More community bonding,” “Keep the language,” “Stay healthy,” I see what culturally appropriate support could look and feel like.
“Beverly is like my daughter,” says Ma in Mandarin, “and she cares about us seniors.”
“Beverly came to my home early in the morning right away when she heard that I fell,” Ma says, remembering the time when she fell from bed at night. “She took me to the hospital right away and has accompanied me to so many medical appointments.”
“I hope that one day Yarrow doesn't have to exist and seniors of all races and backgrounds are able to access the health care, housing and income services that they need in their own languages,” says Ho.
“And at that time, we can just hang out with seniors without stress and worries.”