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Empowering people to live well with dementia

Jan 11, 2023 | Dementia

Research shows that when a dementia diagnosis is made, most people feel overwhelmed and they don’t get the support, resources and help they need. Forward with Dementia is a website created to improve the experience and care for people living with dementia and their care partners.

The Canadian version of Forward with Dementia was launched one year ago and is co-led by Carrie McAiney, Schlegel Research Chair in Dementia at the Schlegel-UW Research Institute for Aging (RIA) and Professor in the School of Public Health Sciences at the University of Waterloo.

“Forward with Dementia brings many in-depth resources on dementia-related topics that we currently don’t see a lot of,” said McAiney. “We aim to help people from the day they get a diagnosis, through managing symptoms, supporting wellbeing, and everything in-between.”

You can visit the website to find a checklist of questions to ask health-care providers, a guide for sharing a diagnosis with family and friends, ways to stay physically, mentally and socially active, and more. These resources were developed with help from people living with dementia, care partners, and health- and social-care professionals.

“The site also includes stories written by persons living with dementia and care partners, sharing their experiences of adjusting to the diagnosis and learning to live well with dementia,” said McAiney.

The stories, combined with evidence-based research, help people living with dementia choose their own path forward after a diagnosis. One story shared by Myrna Norman, an advocate for those living with dementia, shares how she realized that just because you are diagnosed with dementia doesn’t mean life is over. Somewhere along the line she got permission to be happy, and she sees that as a pivotal moment in her life after diagnosis.

Things can be better. We can actually take steps to make them better. We know that there are certain tools that we can use, from going for a walk in nature to listening to music, that can actually improve our life.” Norman shared.

The research team found that the personal stories are the most impactful section of the website, which had more than 35,000 visitors from November 2021 to May 2022.

“The core message of hope is that people can live meaningful lives after a diagnosis of dementia,” says McAiney. Visit forwardwithdementia.cato see how this website is helping people do just that.

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Subscribe to updates from RIA at https://www.the-ria.ca/subscribe-to-our-newsletter/ to find out how residents, care partners and team members can get involved in projects like this one.

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