Tag Archives: By Mary Beth Wighton

Introducing the Ontario Dementia Advisory Group

screen-shot-2016-09-28-at-9-54-38-amAt DAI, we work whenever possible to support not only the global advocacy work of our members and if possible, all people with dementia, but if we can support individuals or groups nationally or locally as well, we do our utmost to do so.

We are proud to work with the Ontario Dementia Advisory Group and support them with their work as they feel the need, whether it is a zoom meeting, a webinar or a chat on Facebook. We don’t directly impact their work, or persuade their strategic direction, or their local or national goals and ambitions in any way (unless of course we are asked to), but what we can do, is support them in other ways. For example, the global work DAI has done on human rights and the CRPD, was able to positively support them with their own senate submission earlier this year.

What we can’t do alone, we can do together, either side by side with our sleeves rolled up together, or supporting each other from afar.

The creation of the Ontario Dementia Advisory Group

By Mary Beth Wighton on behalf of the ODAG

“Just a mere 2 years ago, the idea of people with dementia being central to their care was not readily considered. In Ontario, there was not even one group made up solely of people with dementia who self-governed. In fact, this was the case for all of Canada.

It was at this time, the Ontario Dementia Advisory Group (ODAG), was created. Five people living with dementia came together knowing that it was time for us to to stand up and raise our voices. I’m proud to say we have been very successful.

ODAG is unique in the fact that it is made up of people with dementia – and not care partners. We have created a structure that puts people with dementia in the center and partners around us. Our strong relationships with a variety of types of organizations has helped in enabling us to accomplish our goal of influencing policies, practices and people.

In fact, we have been so successful that we are the only group in North America like this. Internationally, we are recognized as being one of only 6 other organizations who collaborate and work together with governments of all levels, Alzheimer Associations, Research and a multitude of other types of organizations.


ODAG is at a very important stage in its growth. Currently, we only have a membership of eight people. This is obviously too few for the work that needs to be done. Recognizing this, we have begun the process of developing a Recruitment Strategy plan that will bring in 500 new members over the next year 15 months. Yes, 500 members!

You may be asking yourself, what will we do with all of those members. Why do we need them? What’s the goal? It is simple:

  • We need more PWD voices to fight for our citizenship rights as declared in the United Nations treaty
  • We need to challenge stigma that encourages people to speak for us and represent us. We can speak for ourselves and contribute in meaningful ways.
  • 500 PWD will allow for us to apply political pressure to fight for our needs – in particular transportation and resources allowing us to live at home for as long as possible. In fact, the Ontario Dementia Strategy Discussion document has just been released. ODAG intends to help PWD understand the plan and provide feedback to the project team.
  • And it will provide ODAG with the ability to forge new and strong relationships. Canadian Senate
  • ODAG garnered international attention when it spoke as Witness for the Canadian Standing Senate Committee on Social Affairs, Science and Technology for its study of dementia in Canadian society.

In a historical moment for the rights of people living with dementia, ODAG used the United Nations Convention on the Rights of Persons with Disabilities(UN CRPD), Accessibility Article, to obtain a number of accommodations from the government. It is the first time in Canada people with dementia advocated for ourselves in such a manner. The results were electrifying!

ODAG’s most recent achievemet involves our membership of a new Task Force named the “Canadian Dementia Working Group” which is a consortium of non-governmental disability organizations in Canada. It submitted a Memorandum to the UN CRPD as it relates to “Concluding Observations” report from the UN to Canada.

The ODAG members and all of our Partners have done a fantastic job on pushing for the rights of PWD. Continued success is on the horizon!”

Please do watch this remarkable video made about some women in Canada, living strong with dementia.

“I have had the privilege and honour to meet the women in this video, in person or online, and love them and their work” (Kate Swaffer, Chair, CEO and co-founder of DAI).