Some families live with dementia in silence. A Hamilton group is trying to change that

At 96 years old, Joyce Agnes King is thriving in Hamilton.

She gardens. She knits. She solves crossword puzzles. She takes walks around her neighbourhood and keeps busy with friends and community activities.

"I live alone now, but I'm not lonely," King said.

King, who immigrated to Canada more than 40 years ago from Guyana and worked at St. Joseph's Healthcare Hamilton, says the secret to her longevity is staying active, maintaining a positive outlook, and remaining connected to others.

"I always see the shiny side of the penny," she said. "I love to be around people and I love to talk."

Those lessons echoed throughout the Black Seniors Brain Health Forum, a conference hosted this past week by the Afro-Canadian Caribbean Association (ACCA).

Researchers and health professionals discussed ways seniors can protect their brain health and reduce their risk of cognitive decline through healthy eating, physical activity, and social connection.

Evelyn Myrie, president of the ACCA and organizer of the event, says one of the biggest obstacles to better brain health isn't medical — for some Black families, it can be cultural.

She says stigma around dementia, for instance, remains common in many Caribbean, African and other racialized households, where even the mere reference to dementia could make people "freeze."

"People don't want to talk about it," Myrie said. "They struggle alone and families don't get the support they need because they're almost embarrassed to talk about what's happening at home."

Some families avoid discussing symptoms because they fear being judged, she says. Others see dementia as a private family matter that should not be shared outside the home. As a result, people may delay seeking support or miss opportunities for early intervention.

"They think maybe it could be seen as a mental illness," Myrie said.

It is why she says she intentionally framed Wednesday's gathering around brain health rather than dementia alone.

According to the Alzheimer's Society of Canada, nearly one million people in Canada will be living with dementia by 2030. By 2050, that number is expected to surpass 1.7 million.

Among people in Canada with African ancestry, the increase is expected to be even more dramatic. An estimated 4,800 people of that ancestry were living with dementia in 2020, a figure projected to rise to more than 29,000 by 2050, according to the Alzheimer's Society of Canada.

Myrie says those numbers underscore the need for outreach tailored to Black communities.

She says hearing from researchers and experts who understand the community helps build trust and credibility around a topic that can be difficult for families to discuss on their own.

Black people faces unique challenges, she said, including higher rates of health conditions such as hypertension and diabetes, both of which have been linked to an increased risk of dementia.

"We want people to understand that there is hope," Myrie said. "If you're starting to see signs and you begin taking steps to care for yourself, you can slow things down. You can still enjoy quality of life."

Toronto dancer and choreographer Michael Mortley was among the presenters at the conference. He uses movements inspired by Caribbean culture to help older adults stay physically and mentally active.

Instead of more gym-based workouts and using equipment, Mortley says he built his program with movements around activities many seniors remember from life back in their home countries. That includes sweeping a yard with a traditional coconut broom, washing clothes by hand, hanging laundry and rolling dough.

The exercises are designed to improve balance, mobility and coordination while also triggering memories, Mortley says.

"It's about pushing them to have their brains fire on a different level," he said.

Mortley also uses music in his workshops. In one interactive activity, he played "Hill and Gully," an old Jamaican folk song that has become a popular 'riddim.'

"By hearing the song, what are some of the things that pop out that that you all could viscerally remember?" Mortley said.

"We're going to start from, 'Okay, let's go back into that place,' and how can we then build something from that that you cognitively remember?"

What followed was a room full of seniors smiling, singing along, and effortlessly syncing with Mortley's dance movements.

"Their lived experiences allow them to draw those memories back," he said.

For Myrie, that cultural connection is exactly why it is important to have programming tailored to Black communities. She says many of the seniors engage more with the information when there is a sense a familiarity in things like music, food and traditions.

Wednesday's conference was the first of several planned conversations around brain health and dementia awareness as part of a three-year partnership between the ACCA and the University of Waterloo.

The room was full at the ACCA space on Barton Street. The turnout, Myrie said, shows there is an appetite for those discussions.

"There's a receptivity and openness for organizations to connect with the diverse community and change the narrative, so I'm really happy about that."

For more stories about the experiences of Black Canadians — from anti-Black racism to success stories within the Black community — check out Being Black in Canada, a CBC project Black Canadians can be proud of. You can read more stories here.