For Jasleen Kaur, learning how to care for a loved one with dementia has been more than a research project. It has also been a personal journey of discovery.
The international student from Punjab, India is in her second year of Sheridan College’s “Social Service Worker — Gerontology” program and was part of a research team that helped develop resources specifically geared toward improving interactions with South Asians living with dementia.
After recognizing an existing gap in easy-to-understand linguistic and culturally appropriate resources for South Asians, Kaur, fellow student Rajni Sharma and professors Ferzana Chaze and Nellie Groenenberg created a Hindi-language tool kit with culturally relevant scenarios to demonstrate negative and positive ways for family members and carers to respond.
Kaur said it’s about improving awareness among South Asians of dementia and helping family members provide better care.
“It’s not just the medical care they need. It’s the emotional support that people having dementia need,” said Kaur.
These scenarios include examples of a reluctance to bathe, challenging behaviour, anger, lying, having trouble sleeping, repetition, misinforming, misremembering and living in the past were conceptualized by the students and then vetted by the Alzheimer Society of Peel.
The ‘Interacting with Persons with Dementia In South Asian Communities’ tool kit was made available on SOURCE, Sheridan’s Institutional Repository in March 2022 and a Punjabi-language audio version followed.
After working on the project, Kaur said it helped her better understand her own interactions with her grandmother, who was repetitive, mixed up names and couldn’t remember things.
While there’s been no official diagnosis, Kaur said by learning about dementia, her family is recognizing the early signs in her grandmother and they’ve adjusted their response toward her, when previously they’d get annoyed.
“I knew why she was behaving like that. I didn’t get angry at all. I didn’t ask her ‘why are you doing that?’ I tried to validate her and little things were changed in me, with respect to her behaviour. So that makes a lot of difference for me,” Kaur explained about a recent visit to India where she saw her grandmother.
Danielle Farrell, public education co-ordinator at Alzheimer Society Peel said the goal is to have the tool kit support family care partners, increase their knowledge and “in turn, improve the lives of those living with dementia.”
“The Alzheimer Society Peel was pleased to collaborate as Peel Region has a large South Asian community. It is key that people have the ability to access information on dementia that is culturally sensitive and appropriate,” said Farrell.
Groenenberg, the program co-ordinator, said the feedback has been positive, with the tool kit being downloaded hundreds of times across Canada, the U.S. and India, and shared widely.
She said the willingness of community volunteers to help translate the scenarios into Hindi showed the strong appetite for accessible and inclusive materials.
“The enthusiasm and desire to want to give back and help, I think for me was incredibly moving. We were totally surprised,” Groenenberg added.
The Brampton resident has worked closely with South Asian communities, has over 20 years of social work experience and said the project helped her understand how diverse and nuanced their experiences are.
She said while dementia is complicated and hard, it doesn’t mean a person’s life is over and they are a shadow of their former self.
“We want people to be enjoying their family members and still experiencing things in life, laughing and having joy,” she said.
The research is ongoing, Groenenberg said, and with requests to have the tool kit translated into more languages, the hope is to continue the conversation.
STORY BEHIND THE STORY: January is Alzheimer’s Awareness Month in Canada and we wanted to look at some of the efforts being made by Peel residents and researchers to educate communities.