Faces of dementia: Navjot's story
Here, family care partner and researcher Navjot Gill talks about experiencing barriers to culturally sensitive, South Asian–inclusive dementia care with her grandmother, who is living with dementia, and her parents, who are care partners. She also discusses her work in dementia research, trying to make future services better and more inclusive.
"My journey with dementia started when my grandmother was diagnosed back in 2016. At that time, I had an understanding of what dementia was through my college studies in physiotherapy. Initially, when my grandmother was diagnosed, it wasn’t that bad, in a way. You know, she still got by. But as it progressed, it just got to a point where one of us had to be at home all the time to ensure she was doing okay.
Early on, I tried explaining to my parents what dementia was. And that’s when I started to see that there were many programs and resources in our area for people living with dementia, but they were not culturally appropriate.
I saw, for instance, information about sleep issues and dementia, and I thought, “Oh, this might be useful. Let me see if I can show my parents.” They were trying to manage some of that, but because it was in English and my parents aren’t completely fluent in English, that didn’t work.
And then I was like, “Okay, let me see if I can find something in Punjabi for them.” And we really needed that in terms of my parents’ understanding behaviour, such as losing one’s way and restlessness in the late afternoon. For instance, my grandmother often talked about her “babies,” not realizing they were grown-ups. In her mind, she is in her 40s, and my parents were like, “What are you talking about? Like, you know, your daughters are married, you have grandchildren, you have greatgrandchildren.” They would correct her every time. And I was like, “This is not what you’re supposed to do.” But there was no way I could explain it to them.
So I basically just searched, “Explain dementia in Punjabi.” And the UK Alzheimer’s Society has many resources. But their health-care system is different; their subculture is different; everything is different. I couldn’t really bring that over to my parents here in Canada and be like, “Okay. This fits.”
In the end, I did show them a dementia video that had been translated into Punjabi. It showed this European couple living in the suburbs, with a robotic voiceover in Punjabi—so the language was there, but my parents couldn’t connect with that; they didn’t see themselves being represented.
To me, that video, and others like it, have also reinforced this idea that exists in some South Asian communities—that dementia is a European disease and that it doesn’t happen to people of colour. In fact, after watching that video, my dad was like, “See, I told you, it’s a White couple.” So that put them off.
What we need are more resources—on paper and on video—that have South Asian representation. Not just a robotic voiceover. We need something that normalizes that a brown person can have dementia too. And it needs to address specific behaviours and tips, not just describe the condition.
Luckily, there is now work being done. Sheridan College [and the Alzheimer Society of Peel] recently released a dementia toolkit in Hindi, which kind of explains different scenarios and what you should be doing.
"What we need are more resources—on paper and on video—that have South Asian representation."
But there’s still a long way to go in terms of services being inclusive and culturally sensitive.
I worked as a program assistant with the Alzheimer Society, so I had first-hand experience of the amazing programs that they had, and I would always wonder, “What if my grandma could be a part of this?” But if I tell her to go play bingo, well, bingo is a Western concept. She didn’t grow up playing bingo. She never understood bingo. I can’t just push her into these things.
Then also issues with home care services. We had a PSW come in, but the PSW didn’t speak our language. She would speak English and then my mom—who was working full-time, as was my dad—would still have to be there to translate and manage everything. Instead of PSW relief being a time when my mom could get a break from providing care, she absolutely had to be there—and grandma would get even more anxious, in fact, because the PSW was speaking in English and then my mom was translating. It wasn’t very clear and was concerning to her.
So my parents don’t have any respite. They don’t have those care partner support groups they can go to because we don’t talk about it in our community. It’s a huge stigma.
And there’s also a stereotype some health professionals have around filial piety: “If this person is brown, they’re going to take care of their own.” So health workers don’t really give out as many resources to our families; they just assume that they don’t need it when that’s not the truth.
In truth, our families need to hear, “We’re not questioning your ability to provide care. We’re telling you the truth that you can’t do this on your own. There’s no way you can manage your own life and take care of someone living with dementia full-time. It would be best if you had care. You need to be able to ask for help, ask for resources, and advocate for yourself.”
That’s where my research comes in. It is focused on exploring the experiences of South Asian Canadians living with dementia and their care partners. I’m interviewing people living with dementia and their families, offering interviews in English, Punjabi, Hindi, and Urdu, starting with the languages I can speak—to make the research more inclusive. I’m also talking to health professionals to see their understanding regarding culturally competent care and how we can make that shift.
I’m not saying my research will bring a wave of change. But potentially, it will start the groundwork, which still needs to be added.”
Photo: Courtesy of Navjot Gill.