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
MPP Sarah Jama asked to leave Ontario legislature for wearing keffiyeh
MPP Sarah Jama was asked to leave the Legislative Assembly of Ontario by House Speaker Ted Arnott on Thursday for wearing a keffiyeh, a garment which has been banned at Queen’s Park.
Mountain guide dies after falling into a crevasse in Banff National Park
A man who fell into a crevasse while leading a backcountry ski group deep in the Canadian Rockies has died.
2 teens charged in Halifax homicide: police
Two teenagers have been charged with second-degree murder in connection to an alleged homicide near the Halifax Shopping Centre earlier this week.
'Deep ignorance': Calls for Manitoba trustee to resign sparked after comments about Indigenous people and reconciliation
A rural Manitoba school trustee is facing calls to resign over comments he made about Indigenous people and residential schools earlier this week.
ByteDance prefers TikTok shutdown in U.S. if legal options fail, Reuters sources say
TikTok owner ByteDance would prefer to shut down its loss-making app rather than sell it if the Chinese company exhausts all legal options to fight legislation to ban the platform from app stores in the U.S., four sources said.
12-year-old hippo in Japan raised as a male discovered to be a female
When Gen-chan arrived at a zoo in Japan in 2017, no one questioned whether the then-five-year-old hippopotamus was a boy. Seven years later, zoo staff made a surprising discovery: Gen-chan, now 12, was female.
Here's why Harvey Weinstein's New York rape conviction was tossed and what happens next
Here's what you need to know about why movie mogul Harvey Weinstein's rape conviction was thrown out and what happens next.
Improve balance and build core strength with this exercise
When it comes to cardiovascular fitness, you may tend to focus on activities that move you forward, such as walking, running and cycling.
Legendary hockey broadcaster Bob Cole dies at 90: CBC
Bob Cole, a welcome voice for Canadian hockey fans for a half-century, has died at the age of 90. Cole died Wednesday night in St. John's, N.L., surrounded by his family, his daughter, Megan Cole, told the CBC.