• Engagement of People with Lived Experience of Dementia (EPLED)

    Objectives:

    Support persons with dementia and care partners to be actively involved in the CCNA research process;

    Work with CCNA research Teams, Cross-cutting Programs and Partners to develop novel mechanisms and formats to further this collaboration; and

    Advance the methods of patient engagement in research, including specifically for persons with dementia and care partners, by embedding evaluation processes that will measure the impact of these CCNA initiatives.

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  • A Brief Introduction

    The video on the right is a brief introduction to EPLED, including our goals and recruitment process!

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  • Suggestions for Researchers Presenting to EPLED

    An infographic detailing our recommendations for researchers who wish to present to the advisory group

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  • Recommended Resources

    A short video about resources for trainee’s - this was for created CCNA’s Training & Building Capacity team.

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  • Engagement Reference List

    We welcome suggestions for additions to our resource list. Please email Jennifer Bethell - jennifer.bethell@uhn.ca

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  • Engagement of people with lived experience of dementia advisory group and cross-cutting program: refections on the first year

    The objective of this paper is to describe the activities, challenges and mitigation strategies, lessons learned and refections on the importance of engagement from the first year of the Canadian Consortium on Neurodegeneration in Aging (CCNA) Engagement of People with Lived Experience of Dementia (EPLED) Advisory Group and cross-cutting program. EPLED was created to support persons with dementia and care partners to be actively involved in the CCNA research process

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  1. Bethell, J., O’Rourke, H. M., Eagleson, H., Gaetano, D., Hykaway, W., & McAiney, C. (2021). Social Connection is Essential in Long-Term Care Homes: Considerations During COVID-19 and Beyond. Canadian Geriatrics Journal, 24(2), 151-153. https://doi.org/10.5770/cgj.24.488

  2. Bethell J, Commisso E, Rostad HM, Puts M, Babineau J, Grinbergs-Saull A, Wighton MB, Hammel J, Doyle E, Nadeau S, McGilton KS. Patient engagement in research related to dementia: A scoping review. (2018). Dementia (London). Nov;17(8):944-975. doi: 10.1177/1471301218789292. PMID: 30373460.

  3. Bethell J, Pringle D, Chambers LW, Cohen C, Commisso E, Cowan K, Fehr P, Laupacis A, Szeto P, McGilton KS. Patient and Public Involvement in Identifying Dementia Research Priorities. (2018). J Am Geriatr Soc. Aug;66(8):1608-1612. doi: 10.1111/jgs.15453. Epub 2018 Aug 7. PMID: 30084194.

 

References