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Because your voice matters.

Advisory Group Members, Engagement of People with Lived Experience of Dementia Program

Posted • Last updated


Open to Patient partners across Canada

Last updated

Engagement of People with Lived Experience of Dementia is a new Canadian Consortium on Neurodegeneration in Aging (CCNA) program. We aim to engage persons with dementia and care partners in CCNA research – not as study subjects, but as collaborators in planning, conducting and communicating CCNA research. In doing so, we believe it will make our research better and more relevant.

As a member of the Advisory Group, you will participate in one annual in-person meeting (in Canada) and three video/teleconferences during the remainder of the year. You will be compensated for your travel expenses and offered a small honorarium for your contributions. You will receive training for the role, including a general orientation to health research and the CCNA.

During meetings, you may hear from CCNA researchers and have an opportunity to ask questions and offer your feedback and insights, such as by:

  • Providing input on research questions and study design
  • Reviewing study documents
  • Interpreting data and giving context to results
  • Assisting with knowledge translation

We encourage anyone in Canada with lived experience of dementia to apply – those living with dementia and friends, family and current/former care partners.

Please note we encourage bilingual applicants, but the work of the Advisory Group will be conducted in English.

Interested? Looking to learn more? Questions?

Contact Jennifer Bethell by email at or by phone (416) 597-3422.

From Our Community

Jeanette Foreman

Northwest Quality Improvement Lead, Quality and Innovation, Northern Health

Jeanette Forman

PVN has really helped us engage with patient partners to improve health services at Northern Health.  It is more and more becoming the norm to include patients in the design, delivery and evaluation of health services.  PVN education and supports, involving patient partners, have enabled us to develop the capacity to include the patient voice to make care better and achieve better health outcomes.