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
Ottawa public school board, 3 Toronto-area school boards launch lawsuit against social media giants
The Ottawa-Carleton District School Board and three school boards in the Toronto-area have launched legal action against social media giants, accusing them of "disrupting students' fundamental right to education."
Several flight attendants from Pakistan have gone missing after landing in Canada
Multiple flight attendants from Pakistan International Airlines have abandoned their jobs and are believed to have sought asylum in Canada in the past year and a half, a spokesperson for the government-owned airline says.
Tipping is off the table at this Toronto restaurant
A Toronto restaurant introduced a surprising new rule that reduced the cost of a meal and raised the salaries of staff.
Rainfall warnings of up to 90 mm among weather alerts in effect for 7 provinces
Rainfall warnings of up to 90 millimetres, air quality advisories and other alerts have been issued for seven Canadian provinces, according to the latest forecasts.
King Charles calls for acts of friendship in first public remarks since Kate's cancer diagnosis
King Charles III gave public remarks for Maundy Thursday, addressing the importance of acts of friendship, following his and Catherine, Princess of Wales’ cancer diagnoses.
A Nigerian woman reviewed some tomato puree online. Now she faces jail
A Nigerian woman who wrote an online review of a can of tomato puree is facing imprisonment after its manufacturer accused her of making a “malicious allegation” that damaged its business.
Ukrainian child asylum seekers in St. John’s get class of their own
Roughly 50 children will gathered in a St. John’s classroom for the first time on Saturday for unique lessons on Ukrainian language, culture and history.
Donald Trump assails judge and his daughter after gag order in N.Y. hush-money criminal case
Donald Trump lashed out Wednesday at the New York judge who put him under a gag order that bars him from commenting publicly about witnesses, prosecutors, court staff and jurors in his upcoming hush-money criminal trial.
A fight to protect the dignity of Michelangelo's David raises questions about freedom of expression
Michelangelo's David has been a towering figure in Italian culture since its completion in 1504. But in the current era of the quick buck, curators worry the marble statue's religious and political significance is being diminished.