Northern, Ont., university leading new national service for people with rare dementia
Nipissing University is leading a new, nationwide support service for Canadians living with rare forms of dementia.
Caroline Payette started having difficulties with her vision in 2010. As her reading and writing abilities declined, doctors and optometrists couldn't explain why.
Finally, in late 2017, she was diagnosed with posterior cortical atrophy, a rare form of dementia.
"I have trouble with my muscles, legs and feet,” Payette said.
She and her husband Ernest tried to learn more but found it hard to find information.
"During that time there was a lot of confusion,” said Ernest. “Here was a person that was very, very capable and could no longer do the things she was able to do."
That is until they discovered Rare Dementia Support (RDS), a service based in the United Kingdom that helps people suffering from rare forms of dementia.
"All of a sudden we had a home base now,” Ernest said.
“They invited us to join their research program and since then, it's been a much better road.”
The service is expanding its programs and has chosen Canada as a sister branch.
"Our vision at RDS is for everyone everywhere to have the opportunity to meet other people in the same situation to get the right information at the right time,” said RDS U.K. lead Sebastian Crutch.
“That applies to every country. We're actively exploring relationships.”
The expansion is made possible thanks to a $400,000 gift from the Hilary and Galen Weston Family Foundation.
"The foundation has a focus on dementia as well as other neurodegenerative diseases both from a research and care perspective,” said Jeffrey Coull, the foundation’s head of strategic initiatives and projects.
Nipissing University will take the lead in programming. It will be a virtual space for anyone affected by rare and young onset dementia.
The program will offer guidance, support, information and connection to other families in similar situations. The RDS Canada team is made up of dementia practitioner specialists, researchers, educators and people with lived experience.
"We already have approximately 200 people across Canada working with us and we're hoping to extend that," said RDS Canada Lead Mary Pat Sullivan.
“What's unique about our service is people can come and go as they feel the need of support.”
Ernest said it’s crucial that the service keep expanding in Canada so other people living with rare forms of dementia won’t be left behind.
"It's paramount to have access to people who are sharing the steps with you,” he said.
Studies show five to 25 per cent of people with dementia are living with a rare, inherited or young onset form of impairment.
CTVNews.ca Top Stories
Bodies found by U.S. authorities searching for missing B.C. kayakers
United States authorities who have been searching for a pair of missing kayakers from British Columbia since the weekend have recovered two bodies in the nearby San Juan Islands of Washington state.
Amid concerns over 'collateral damage' Trudeau, Freeland defend capital gains tax change
Facing pushback from physicians and businesspeople over the coming increase to the capital gains inclusion rate, Prime Minister Justin Trudeau and his deputy Chrystia Freeland are standing by their plan to target Canada's highest earners.
'It's discriminatory': Individuals refused entry to Ontario legislature for wearing keffiyeh
Individuals being barred from entering Ontario’s legislature while wearing a keffiyeh say the garment is part of their cultural identity— and the only ones making it political are the politicians banning it.
Tom Mulcair: Park littered with trash after 'pilot project' is perfect symbol of Trudeau governance
Former NDP leader Tom Mulcair says that what's happening now in a trash-littered federal park in Quebec is a perfect metaphor for how the Trudeau government runs things.
Saskatchewan households will continue to receive carbon tax rebate: Trudeau
Households in Saskatchewan will continue to receive Canada Carbon Rebate payments, despite the province refusing to remit the federal carbon price on natural gas, Prime Minister Justin Trudeau said Tuesday.
'It's just so hard to let it go': Umar Zameer still haunted by death of Toronto police officer
'We hoped for this day, but we were scared that it would not never ever come because it took so long.' That’s what Umar Zameer, the man recently acquitted in the death of a Toronto police officer, told CTV News Toronto in a sit-down interview on Tuesday.
Senate expenses climbed to $7.2 million in 2023, up nearly 30%
Senators in Canada claimed $7.2 million in expenses in 2023, a nearly 30 per cent increase over the previous year.
Canucks goalie Thatcher Demko won't play in Game 2
The Vancouver Canucks will be without all-star goalie Thatcher Demko when they face the Nashville Predators in Game 2 of their first-round playoff series.
Pedestrian, baby injured after stroller struck and dragged by vehicle in Squamish, B.C.
Police say a baby and a pedestrian suffered non-life-threatening injuries after a vehicle struck a baby stroller and dragged it for two blocks before stopping in Squamish, B.C.