Opportunities - Advisory Group, Engagement of People with Lived Experience of Dementia

Advisory Group, Engagement of People with Lived Experience of Dementia

Canadian Consortium on Neurodegeneration in Aging

 

Project Background

Engagement of People with Lived Experience of Dementia is a new Canadian Consortium on Neurodegeneration in Aging (CCNA) program.

 

The CCNA is a consortium of 350+ clinicians and researchers throughout Canada who conduct research on age-related neurodegenerative diseases, including Alzheimer’s disease, Vascular dementia, Frontotemporal dementia, and Lewy body dementia. The CCNA’s researchers are divided into 19 teams and are working in the areas of prevention, treatment, and quality of life. For more information about the CCNA, please see: https://ccna-ccnv.ca/

 

Throughout the Engagement of People with Lived Experience of Dementia 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.

 

People with lived experience of dementia include:

  • People living with dementia
  • Current and former caregivers of a person living with dementia
  • Current and former friends or family members of a person living with dementia

Note: people living with dementia and friends, family, care partners and caregivers are invited to participate individually or as a pair (e.g., person with dementia and care partner).

 

Roles and Responsibilities

As an Advisory Group member, you will be required to attend meetings and participate in discussions. During the meetings, you will have an opportunity to ask questions and offer insights to researchers, such as by:

  • Providing input on research questions and aspects of study design (e.g., ensuring methods are acceptable and equitable for potential research participants).
  • Reviewing study documents (e.g. ensuring language and content of consent forms and data collection methods are appropriate and accessible).
  • Analyzing and interpreting data (e.g., contextualizing results by providing perspectives of lived experience).
  • Assisting with knowledge translation (e.g., helping to ensure study results are communicated in a way that is accessible and meaningful).

 

Time Commitment

One-year time commitment with the possibility of renewal. Anticipated start date is Spring 2020.

There will be four meetings held in the one-year period:

  • Three teleconference (phone) or videoconference (computer) meetings held during the day, generally lasting 1-2 hours.
  • One in-person meeting will be held in Canada (Halifax, Nova Scotia in October 2020, then different location each year), generally lasting a day or more.

 

Reimbursement/Compensation

You will be reimbursed for all travel expenses to attend meetings. A small honorarium will be offered as compensation for time and valued input.

 

Contact Information

To apply, please complete an application available online: http://ccna.hostedincanadasurveys.ca/index.php/711989?lang=en

Or access a copy for download from: https://ccna-ccnv.ca/wp-content/uploads/2020/01/Advisory-Group-application-form.pdf

 

To learn more about this project please contact:

Jennifer Bethell

Jennifer.bethell@uhn.ca

416.597.3422 extension 2158