Bhavini Patel’s father never missed an issue of The Globe and Mail, reading it from front to back when it arrived on his doorstep. “For decades, we subscribed to it at home,” she recalls. “Then, one day he said to me, ‘Cancel the subscription. I don’t feel like reading the paper anymore.’” That was the moment she realized something was very wrong. She soon learned that a diminished enjoyment from reading, due to short-term memory loss and challenges with focusing, was an early sign of dementia—and she had to come to terms with the knowledge that it would only get worse.

“Every time you see your dad losing a part of himself or a skill set, there is grief in that,” she says.

Patel had reached the pinnacle of her career when she left in 2019. At that point, her father, Kantilal Patel, had already been living with dementia for six years, and she could tell his condition was deteriorating. At the time, there were few options for remote or flexible work in Toronto that would allow her to keep up with her father’s changing needs. So Patel decided to step away from her livelihood as an operations director to care for him full time.
Her story is one example of the difficult decisions made daily by care partners of people living with dementia in Canada. (“Care partner” is the preferred term over “caregiver” by various awareness and support groups, to preserve the dignity and agency of those who have been diagnosed with dementia.) And this group is about to surge in size. 

According to a landmark study by the Alzheimer Society of Canada released in early 2024, the next 30 years will see a rapid growth in the scale and racial makeup of people diagnosed with dementia. The number of Black Canadians with dementia is anticipated to increase sixfold; for Latin, Central and South Americans, it will multiply by more than five; those with Indigenous ancestry can expect the number to increase by four. And the most significant rise will be seen in Asian Canadians, who will comprise a quarter of dementia patients by the year 2050. While “Asian” is a broad term, the report categorizes this as a population whose origins include Chinese, Indian, Filipino, Pakistani and Sri Lankan. 

This study coincides with a 2020 report by the Royal Society of Canada that revealed how the dilapidated condition of many long-term care homes across Canada was exacerbated by the COVID-19 pandemic. Decades of federal cutbacks, and a shift to a patchwork system of provincial responsibility, has led to outdated critical infrastructure, both physical and institutional, failing to keep up with the evolving needs of an aging population.So, while witnessing someone close to you gradually lose their memory, language capacity and cognitive function may already be difficult, care partners, many of whom are already stretched thin, face an additional burden. They have to locate care that acknowledges their loved ones’ ethnic background, and also navigate a system that is rarely equipped to provide racialized people with the support they deserve.

Around the world, dementia is on the rise. The number of people diagnosed with the disease is projected to reach 135 million by 2050, with more than half of these people living in Asia–Pacific countries. 

“Canadians who might be under-represented, or coming from different ethnocultural backgrounds, can be affected by dementia disproportionately—and not just [in terms of] medical numbers,” says Dr. Roger Wong, one of the experts cited in the report and a clinical professor of geriatric medicine at the University of British Columbia. 

He notes that the explanation for the uptick can be attributed to several reasons, including the most obvious: the higher number of people coming to Canada from Asia correlates with the growth of dementia diagnosis in people of Asian backgrounds. What medical professionals have yet to resolve is: What are the biological and environmental factors driving their over-representation? Still, Wong’s concern extends beyond the rising prevalence of dementia; he’s also interested in the varying impacts on each individual’s journey, with “life costs” differing significantly. Generally speaking, “life costs” refers to the social and financial burdens of managing a chronic health condition over a lifetime. These can include direct expenditures, like uninsured medical bills, or indirect costs, like unpaid labour provided willingly by family members. 

Every time you see your dad losing a part of himself or a skill set, there is grief in that

Bhavini Patel

For Patel’s father, these were compounded by his experience as an immigrant. Born in Mumbai, her father went to university in Mumbai and became proficient in four different languages: his native Gujarati, Marathi, Hindi and English. When he immigrated to Toronto in 1981 from London, his senior credentials from the U.K. were denied in Canada. He was forced to start from the beginning, working his way up again from bank teller to eventually landing a job at the head office of a downtown Toronto bank.

“You lose as an immigrant,” Patel says. “When you start again, you lose your ability to invest in yourself and contribute to your pension plans, into your investments. It prevents you from getting proper loans and lines of credit, which puts you into debt, [causing you] to use up savings you previously built.”

Due to insufficient research on higher instances of dementia in racialized communities, it is unclear whether Mr. Patel’s late diagnosis can be attributed to his lived experience as an immigrant. Still, Wong emphasizes that social determinants of health have different impacts on dementia, like housing insecurity, financial instability and inadequate access to geriatric care. “Stress from racism can affect brain health,” the study states. 

However, outside of empirical research, the impact of the aforementioned statistics are playing out in very real ways across Canada. 

To start, there exists a critical lack of multilingual resources. As it stands, a majority of the resources for dementia care in Canada are in English. Support groups for those living with dementia and for their care partners also tend to be in English. For both parties, this creates significant obstacles—if English is not the primary language of a main care partner, accessing adequate care is more challenging. 

This is compounded by the phenomenon of “first in, last out,” a common term in dementia care. It refers to a neuroanatomical condition where earlier memories and native languages are often the last cognitive features people living with dementia will lose, if at all. (An individual’s physiological age might be 70, while their self-perceived age might reflect a 40-year-old version of themselves.) Losing memory or sense of self is generally a frightening thought for most people. Isolation and a poorer quality of life are intensified by the inability to understand, advocate for yourself or navigate the world around you. What’s more, even if someone may still have the capabilities to advocate for themselves, the facilities may not exist to properly understand or address their needs. 

For Philip Law, finding a personal support worker to visit his Vancouver home to care for his wife has been especially arduous. After working as a social worker for 45 years, he made the decision to retire last year. A few months prior, his wife had been diagnosed with early-onset Alzheimer’s disease, a designation given to anyone living with dementia before age 65. She mainly speaks Cantonese. 

“Language is a key thing. If there’s no one Chinese to help her, that may be a big barrier for her,” Law says. “She’s not afraid, but just not comfortable with having a stranger or someone non-Cantonese speaking. There’s not much direct individual support for me. I can’t get someone to come to stay with her for a couple of hours so I can go to the gym.”

Without meaningful respite for full-time care partners, the risk of burnout is high. Currently, Law is the only person who can take care of his wife, necessitating that he remain resilient while also adapting to how their lives have been upended by his wife’s diagnosis. 

“[I’m] stressed out, depressed. I don’t see hope. When you take care of a kid in kindergarten, you know, day by day, they will learn how to write ‘A-B-C, 1-2-3.’ [It’s] the opposite for my wife. She forgets how to write ‘A-B-C, 1-2-3.’ It’s challenging,” Law says.

Recently, the couple has found culturally responsive programs, largely administered through the British Columbia chapter of the Alzheimer Society. One such program, Minds in Motion, offers fitness programming and an opportunity for social connection, and is aimed at anyone living with early-stage dementia. It includes a social portion that invites Cantonese speakers to converse and play mah-jong. 

In fact, the Alzheimer Society chapters across Canada have filled an important gap for people living with dementia, and their care partners. The B.C. chapter has a webpage with information entirely in Cantonese, and there’s information translated into numerous languages online. 

Across the country, there are also long-term care (LTC) homes that are specifically designed for seniors of Asian heritage. Yee Hong, for example, is one of the country’s largest not-for-profit long-term care homes. Their services include linguistically and culturally trained staff, and diverse menus featuring a wide range of cuisines from Asian countries. Across the Greater Toronto Area, Mon Sheong is another LTC home that serves Chinese seniors and offers adult day programs like qigong classes, and celebrations for the Chinese New Year and Moon Festival. In Toronto’s east end neighbourhood of Scarborough, Momiji Residence is a non-profit apartment complex that caters to Japanese seniors by providing 133 units that have been designed with Japanese-inspired decor. 

While these are long-overdue steps forward, the wait lists at culturally focused homes are three times longer than mainstream LTCs—and that’s if families can even find one within a reasonable distance. Despite comprising the largest demographic of racialized people in Canada, there are currently no LTC homes catered to South Asians. Jeevan Niwas, a privately owned retirement home for South Asians, is slated to open in Brampton, Ontario, in 2024, but it’s unclear whether the centre will accept people with dementia. 

However, a broader question persists around the stigma attached to placing a parent or loved one in a care facility. “In our culture, long-term care homes are not really often an option because of filial piety,” says Navjot Gill-Chawla, a PhD student at the University of Waterloo focusing on the experience of people living with dementia and their care partners in the South Asian community. 

When Gill-Chawla’s grandmother was diagnosed with dementia in 2016, she noticed it was difficult to explain to her Indian parents what dementia was. (There’s no direct translation for it in Punjabi.) She found an informational video online with a Punjabi voice-over, but the couple depicted was white—her parents couldn’t connect.

“The biggest thing is the lack of awareness we have within the South Asian community. [There’s a] stigma that’s surrounding this whole condition. Because of the stigma, people don’t want to talk about it. It’s a vicious cycle,” Gill-Chawla says. 

Some recent developments are promising, though. Forward with Dementia is a collaborative program created by universities around the world, including several Canadian institutions. It aims to challenge negative stereotypes and provides guidance and information in a range of languages, including guides on follow-up questions after a dementia diagnosis, managing neurological and behavioural changes and, foremost, remaining optimistic. Currently, the languages offered are Punjabi, Urdu, Hindi, simplified Chinese, traditional Chinese, Italian, English and French. 

I’ve had it put to me that these are ‘preferences.’ I’ve replied, saying ‘No. They’re not preferences. They’re needs.’

saleem khan

Gill-Chawla explains that nuances within ethnocultural groups shouldn’t be dismissed. A term like “South Asian” is helpful when presenting data, but there are so many different regions, cultures and religions within that designation. 

All health care professionals and researchers, whether they work with specific communities or not, should strive to practise cultural humility, Gill-Chawla says. “It’s a lifelong learning process where you’re open to learning about somebody else’s culture when you engage with them. You try to put aside your biases.”

Cultural humility would have gone a long way for Toronto-based Saleem Khan when he served as care partner for his parents, who were both eventually diagnosed with dementia. While he notes his father had a different elder care journey than his mother, he says both experienced discrimination within the health care system. 

His parents immigrated to Canada in the early 1960s. His father arrived with an advanced degree from the London School of Economics in the U.K. Like Patel’s father, he quickly found that his credentials weren’t recognized in Canada, and he would have to repeat his entire degree from the beginning before he was able to practise as an accountant. His mother worked as a teacher’s assistant and volunteered for the Red Cross. 

“My dad was a no-nonsense kind of person. He was very straightforward,” Khan says. “He wouldn’t allow himself to be given a lower standard of treatment.”

Khan recalls a time shortly after his father had a stroke and was in the hospital with partial paralysis. “He called for some assistance to get up because he had to go to the bathroom. [A senior nurse] came and said, ‘Just go where you are and we’ll clean it up. Go in the bed.’ He looked at her like, What are you talking about? I’m a grown man. Help me get up and go to the bathroom. And she argued with him about it.”  

“There’s a level of cleanliness that’s culturally ingrained, especially if you’re Muslim. [Cleanliness] is a requirement. So you’re telling someone at an advanced age, who pays the utmost attention to their cleanliness and personal hygiene, to throw it all out the window, and basically soil themselves [and lay in it] for an undetermined period of time,” Khan says.
“For racialized people, there’s an inherent bias…they’re not taken as seriously [in health care settings], and what they’re reporting is not given much weight,” Khan says. He notes that although his father carried himself with a professional demeanour and spoke with a posh U.K. accent, those signals could not override the fact he had brown skin. “Because of his approach to things, he was able to get issues addressed. But they’re issues he shouldn’t have had to deal with in the first place.”

His father had another stroke and was diagnosed with an inoperable cancer in 2015. Despite his dementia diagnosis, he was mentally alert and able to make decisions for himself up until the end. He chose in-patient palliative care because there weren’t resources for him to be cared for properly at home. Several weeks later, he had a major stroke and died. Khan was his full-time care partner from 2011 to 2015.

Khan’s mother had a completely different experience. Gendered bias in medicine has long been documented. Women are at a higher risk of being dismissed, misdiagnosed and ignored than men. Similar to his father, his mother had a stroke and was diagnosed with dementia afterward, though Khan still wonders whether that diagnosis was accurate because she was often assessed while experiencing brain fog as a result of the stroke. She was in the hospital full time during the height of COVID-19 because of her large-scale paralysis. 

Shortly after her stroke, Khan says an assessor determined she was a top candidate for in-patient occupational therapy at a rehab facility, and there was a strong likelihood that she’d be able to function on her own again. His mom was enthusiastic and keen to continue her recovery journey. However, upon arrival, she was sent back to the hospital as the doctor decided she wasn’t yet medically stable. 

“We’ll hold her place,” Khan recalls the doctor saying. But once his mother returned to the original hospital, a new doctor in rotation contradicted the information in her file that previously made her an ideal candidate, in spite of the recommendations of her team of nurses and even the head of the department. This new doctor said she wasn’t motivated or interested. Her place was rescinded. 

Though unable to offer all the details due to ongoing issues that need to be resolved, Khan says this was a top doctor at a big hospital in Toronto who he believes discriminated against his mother, thus costing her a chance at occupational therapy.

It was not the first time they received pushback. Khan’s mother, a devout Muslim, needed to stay in all-women rooms at various hospitals. At one particular hospital, this became an issue when they placed her in a room with a man. “I spoke to three different hospital managers. The first was very argumentative. I said, ‘Look. She’s a practising Muslim woman…she can’t be in a room alone with some strange man,’” he says. 

At one point, Khan says the manager insisted they have a lot of “Muslamics” who don’t have a problem with it. “How is it that you’re in a position of authority in this city [with] the largest Muslim community in Canada, and you don’t even know what to call a Muslim?”

Though the nurses were overwhelmingly sensitive and made their best effort, issues for his mother would persist, and he found that he was met with constant resistance whenever he advocated on her behalf. At-home care, again, was not a viable option, which is the case for many Canadians. Full-time care partners say that finding at-home support in general is difficult, and even more so after a paralyzing stroke. While there is care available through public health care systems, they can be difficult to navigate, wait times can be extensive and funding is not guaranteed. 

Meanwhile, private care can be cost-prohibitive due to the significant out-of-pocket fees. There are few options for financial alleviation offered by the government, and care partners must often leave gainful employment to properly support loved ones. While these are universal challenges in Canada, the burdens racialized people face in the health care system exacerbate an already difficult situation. 

Anticipating a future where racialized people are diagnosed with dementia at higher rates, Khan says the current model of health care is far from ideal. He struggled with finding halal meals his mother could eat. Male nurses were consistently being assigned to her, despite her objections.

And, so, he fears people will not receive the culturally specific, relevant care they need. He says there needs to be an organized effort to establish facilities that prioritize patient-based care as a main objective—with measurable goals and performance indicators. 

“I’ve had it put to me that these are ‘preferences,’” Khan says. “[I’ve replied, saying] ‘No. They’re not preferences. They’re needs.’”

Both of Khan’s parents have died, but he’s still engaged in conversations to rectify the oversights his mother faced while she was alive. 

As for Patel, her father died in December 2022. While she continues to advocate for financial benefits and culturally focused support for care partners, she says she was happy to spend more time with her father as he was declining. “It was his turn to be looked after,” she says now, with a mix of pride and sorrow. “He was an amazing father. Walking away from my job was a no-brainer.”

And in some ways, she feels like they’ve come full circle as she returns to the workforce in search of employment. 

“I actually channel my dad’s starting-over journey to keep me motivated,” she says. “I really try to use him and his energy to motivate me on the days that it gets really hard.”