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Northern, Ont., university leading new national service for people with rare dementia

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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. 

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