Nothing about them without them

By Jennifer Bethell, Phyllis Fehr and Katherine McGilton, Canadian Dementia Priority Setting Partnership.

The Canadian Dementia Priority Setting Partnership has just launched its questionnaire. Like every Priority Setting Partnership (PSP), we are hoping for responses from different groups and from across the country – in our case, from the 747,000 Canadians living with dementia as well as their friends, family and caregivers, the health and social care providers who work with them and others who are interested in the issue.

But how did we get to this point with the questionnaire?

Like other PSPs, we worked with our Steering Group to develop it. We started with the JLA Guidebook, but also considered what other PSPs had done and incorporated some of our own ideas. We thought we had it figured out. So, we asked the experts at the Ontario Dementia Advisory Group (ODAG). ODAG is a group of people living with dementia in Ontario, Canada. Their purpose is to influence policy, practices and people to ensure that individuals with dementia are included in the decisions that affect their lives. Some of ODAG’s work so far includes advocating for a national dementia strategy, developing Ontario’s dementia strategy and raising awareness about the disease. Their perspectives, as people living with dementia, are unique and their message is clear: “nothing about us without us”.

You might say ODAG and the James Lind Alliance turned out to be a good match.

Phyllis brought the questionnaire to her colleagues at ODAG. They spent time on every section and every question, recording their 30-minute teleconference call for us. As we listened to this honest conversation and thoughtful feedback, it became clear that the questionnaire needed an overhaul. The questionnaire’s instructions were neither easy to follow nor specific enough for the task (and our questions were not much better). We shared ODAG’s insights with our Steering Group and revised the questionnaire, then reviewed this new version with ODAG via videoconference (ODAG members are scattered across Ontario and Kathy, Jen and Dorothy Pringle, the Steering Group Chair, are in Toronto).

And what did we learn from this experience?

Involving people with dementia in developing the questionnaire made it better and, we hope, more relevant and meaningful to the people who we want to complete it. Thank you ODAG for being generous with your time and advice. These contributions to the PSP have already made for a better study. We look forward to working with you more, including as a partner organization in the PSP.

If you are based in Canada and have an interest in the future of dementia research, please go to the Canadian Dementia Priority Setting Partnership webpage to find out more and to take part in our questionnaire.