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New initiative helps people navigate a dementia diagnosis

Nov 15, 2021 | Dementia

Research shows that when a dementia diagnosis is made, the supports provided often aren’t enough. Most people feel overwhelmed, and they don’t get the support, resources and help they need. Forward with Dementia was created to address this issue.

The University of Waterloo and Schlegel-UW Research Institute for Aging are part of a five-country collaboration that is launching Forward with Dementia, an initiative to improve the diagnostic experience and post-diagnosis care for people living with dementia and their care partners. The Canadian arm of the project is co-led by Carrie McAiney, Schlegel Research Chair in Dementia at the Schlegel-UW Research Institute for Aging and Professor in the School of Public Health Sciences at the University of Waterloo. The project is coordinated by Melissa Koch, research assistant, and supported by Emma Conway, PhD candidate.

“The Forward with Dementia launch 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.”

Representing Ontario, the Forward with Dementia initiative will be launched in Waterloo Wellington. An advisory group consisting of persons living with dementia, care partners, and health- and social-care providers provide ongoing advice and feedback to best help those diagnosed with dementia through a variety of supportive resources.

“With the help of the advisory group, we have created a checklist of questions to ask health-care providers, a guide for sharing a diagnosis with family and friends, strategies to stay physically, cognitively and socially active and more,” said McAiney. “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.”

The stories combined with evidence-based research aim to help people living with dementia choose their own path forward.

“The core message of hope is that people can live meaningful lives after a diagnosis of dementia.”

Learn more and access the Forward with Dementia resources at

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