Have your say: Help set dementia research priorities in Canada

Research is vital to finding better ways to prevent, diagnose and treat dementia and improve the quality of life of those affected by it. This study, the Canadian Dementia Priority Setting Partnership, aims to identify priority areas for Canadian dementia researchers and research funding organizations. Your responses to this questionnaire are extremely important. By participating in this study, you can help researchers address what matters most to Canadians like you who are affected by dementia.

Who can participate in this study?

We would like to hear from:

  • People with dementia
  • Friends, family and caregivers of people with dementia
  • Health and social care providers (e.g., doctors, nurses, occupational therapists, personal support workers, pharmacists, social workers, etc.) who work with people with dementia and/or can advocate for them
  • People with no direct experience of dementia, but who are interested in the issue
  • Alzheimer Society board members, volunteers and staff across Canada

How do I participate?

Complete the questionnaire and submit the questions that you would like to see answered through research. The questionnaire is available online or in paper format:

Please note: If you are looking for answers or wish someone to send you information, do not use this survey to request a reply. Please email info@alzheimer.ca for support and include the city and province or territory where you live, so that we can better direct your question.

More information

Why is this study important?

We need better ways to prevent dementia and improve the health and quality of life of people living with dementia. Research is vital to achieving these goals. This study brings the voices of Canadians affected by dementia into the conversation about dementia research in Canada.

What will this study do?

This study asks Canadians affected by dementia about what they believe are the important research questions related to living with dementia as well as dementia prevention, treatment and diagnosis. The research questions identified by you and others completing this questionnaire will be prioritized to produce the “top ten” Canadian dementia research priorities. This study and the accompanying questionnaire follow the methods of the James Lind Alliance, a non-profit organization based in England.

What will be done with the results?

The results of this study will help plan future research priorities for the Alzheimer Society Research Program (ASRP). The research priorities identified in this study will also be shared with researchers and other research funding organisations so that they can address what matters most to Canadians affected by dementia.

Who is leading this study?

The team responsible for carrying out this study is based at the Toronto Rehabilitation Institute – University Health Network. The study is overseen by a Steering Group made up of people affected by dementia, either personally or through their work, including representatives from the Alzheimer Society.

How is the Alzheimer Society involved?

This study is funded by the Alzheimer Society of Canada. The Alzheimer Society is also one of the partner organizations in the study, helping to promote the questionnaire to people affected by dementia across the country.

How can I get more information?

To find out more, contact the study office by telephone, email or in writing:

Dr. Jennifer Bethell
Toronto Rehabilitation Institute -
University Health Network
Bickle Centre (Research), 130 Dunn Ave
Toronto, ON M6K 2R8
Email: jennifer.bethell@uhn.ca
Telephone: (416) 597-3422 ext. 2158

Steering group membership

Chair: Dorothy Pringle, Professor Emerita, Lawrence S. Bloomberg Faculty of Nursing, University of Toronto
Members:

  • Mohammad Ul-Alam, Personal support worker/Care Aide, Bethany Care Society
  • Joan Bullivant-Wallace, Family caregiver & advocate
  • Larry W. Chambers, Scientific Advisor, Alzheimer Society of Canada
  • Carole Cohen, Geriatric psychiatrist, Sunnybrook Health Sciences Centre
  • Katherine Cowan, James Lind Alliance (UK)
  • Phyllis Fehr, Ontario Dementia Advisory Group
  • Miranda Ferrier, President, Ontario Personal Support Worker Association & Canadian Support Worker Association
  • Andreas Laupacis, Physician, Li Ka Shing Knowledge Institute, St. Michael’s Hospital
  • Chris Ragonetti, long-term care physician
  • Nancy Rushford, Alzheimer Society of Ontario
  • Eveline Sabourin, Winnipeg Regional Health Authority
  • Kathleen Scott, Vice President, Ontario Personal Support Worker Association & Canadian Support Worker Association
  • Paula Szeto, Occupational therapist, Toronto Rehabilitation Institute – University Health Network
  • Katherine McGilton, Principal investigator & Senior scientist, Toronto Rehabilitation Institute – University Health Network
  • Jennifer Bethell, Postdoctoral research fellow, Toronto Rehabilitation Institute – University Health Network

Partner organizations

  • Alzheimer Society of Canada
  • Alzheimer Society of Alberta and Northwest Territories 
  • Alzheimer Society of B.C.
  • Alzheimer Society of Manitoba
  • Alzheimer Society of New Brunswick
  • Alzheimer Society of Nova Scotia
  • Alzheimer Society of Ontario
  • Alzheimer Society of Prince Edward Island
  • Alzheimer Society of Saskatchewan
  • Canadian Academy of Geriatric Psychiatry
  • Canadian Association of Social Workers
  • Canadian Geriatrics Society
  • Canadian Gerontological Nursing Association
  • Canadian Home Care Association
  • Canadian Hospice Palliative Care Association
  • Canadian Society of Palliative Care Physicians
  • Canadian Support Workers Association
  • Family Councils Ontario
  • Federation of Quebec Alzheimer Societies
  • Huntington Society of Canada
  • Ontario Dementia Advisory Group
  • Ontario Long Term Care Association
  • Ontario Personal Support Worker Association
  • Parkinson Canada
  • Speech-Language and Audiology Canada
  • Students Against Alzheimer’s University of Toronto

Last Updated: 11/08/2017