September 1, 2020

On September 21, around the world people celebrate World Alzheimer’s Day. This day is an opportunity to share stories of dementia and Alzheimer’s, to spread awareness and reduce the stigma people living with dementia face. The RIA is proud to work with an inspiring group of people impacted by dementia who have been breaking down barriers for over 15 years.

The Murray Alzheimer Research and Education Program (MAREP) at the RIA partners with people living with dementia to collaboratively conduct research and create education and resources. For the past 15 years, a group of talented and passionate people with lived experience, supported by MAREP, have worked to develop the By Us For Us Guides. Since then, the developers of these guides have been fighting stigma by creating not one resource, but a series.

Paul Lea is a dementia advocate and member of the By Us For Us Guides working group. Lea joined the group to provide his knowledge and lived experience.

“My favourite part about working on the project is the collaboration. I am enjoying working with the team, and the work is interesting. Everyone has made contributions, shared their thoughts and opinions. There are so many diverse people, it’s nice to be part of a group like that.”

The guides are designed to equip people living with dementia with the necessary tools to enhance their well-being and manage daily challenges. The content of the guides is created BY people living with dementia FOR people living with dementia. There are guides on a variety of topics from communication tips, to safety when out and about to early diagnosis.

All By Us For Us Guides are developed using the Authentic Partnerships Approach. People living with dementia must be meaningfully involved in decisions affecting their wellbeing, and this approach uses this as its guiding principle.

“Over the years I have picked up information, given workshops, and talked to a lot of people [about dementia]. With this group, it gives me additional tools to help the people I am talking to” says Lea. “There are people getting [diagnosed with] dementia as young as in their 30s. Those living with dementia can still contribute, can still work and they can still live well. Sometimes they may need help and the stigma that comes with the diagnosis is real. With education and understanding, they can live a long and prosperous life. But folks who are newly diagnosed don’t have lived experience and they don’t know what to look for and how to live well. These guides will help them with that.”

The By Us For Us Guides working group is currently working on a re-fresh of the guides. By building on the strong foundation of the past 15 years, the group is hoping these resources will continue to enhance the well-being for people living with dementia and their care partners for years to come. The new guides are expected to be released in 2021.

The By Us For Us Guides are currently available for download or purchase.

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