July 2, 2020

There are too often significant gaps during and after a dementia diagnosis. On top of long wait-times to have testing done in the first place, family and care partners are often left in the dark about what their diagnosis is and where they can turn for help afterwards. A three-year international project is aiming to create campaigns and toolkits that can be customized and used across the world to give support and hope to people through the dementia diagnosis process.

Professor Carrie McAiney, Schlegel Research Chair in Dementia, is leading the Canadian portion of this multi-country initiative called COGNISANCE. McAiney’s experience working with people living with dementia and their care partners has shown her the need for new kinds of support. She says some physicians may not even tell their patient about the diagnosis. Or they only tell the family member. Or they don’t fully tell the family member but hint around it instead. Another thing McAiney says she often hears is that a diagnosis of dementia is given with no hope or follow-up supports.

“We know dementia is a very difficult disease, and we know it can eventually be terminal. But we want people to know you can live well with dementia. You can still engage in activities, enjoy life and have a sense of purpose.”

Over the next three years researchers in Australia, Canada, the Netherlands, the UK and Poland will work with people living with dementia, family care partners and health care professionals in each country to create toolkits and campaigns to improve the dementia diagnostic process and post-diagnostic support.

Once these have been created and implemented in each country, the materials will be evaluated. This is the
phase of the project that Canada, and McAiney, will lead.

“We’re going to be looking at how the different countries are rolling out these resources and campaigns. What’s working well and what’s not working, and most importantly are these resources making a difference for
people with dementia, for families and for health and social care providers?”

Ultimately McAiney hopes the project provides tools to help physicians share information and make the diagnosis a better experience, but she also hopes as the information they develop spreads, the public will know what to expect.

“We want to see some linkages. If we’re suggesting to physicians that we have shown this is a better approach to share a dementia diagnosis and support your patients with dementia, equally we want the patient to be expecting that type of care.”

This project was awarded by the EU Joint Programme – Neurodegenerative Disease Research Program (JPND) and is funded in Canada by the Canadian Institutes of Health Research and the Public Health Agency of Canada.

This story was featured in the July issue of RIA’s Research Matters. Read other issues of Research Matters.