The Engagement of People with Lived Experience of Dementia (EPLED) program was introduced in 2020 as part of the Canadian Consortium on Neurodegeneration in Aging (CCNA) Phase II (2019-2024). EPLED is continuing in Phase III of CCNA (2024-2029).

Through this program, we will work to enable those with lived experience of dementia – persons with dementia and their care partners (i.e., friends, family and caregivers) – to be meaningfully and actively involved in the research process, including governance, priority setting, conducting research and knowledge mobilization.

Objectives

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

2. Work with CCNA research Teams, Programs, and Partners to develop novel mechanisms and formats to further this collaboration

3. 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

  • Jennifer Bethell (she/her), BSc, MSc, PhD

    Co-Lead

    Jennifer Bethell (she/her) is an Affiliate Scientist at the KITE Research Institute, Toronto Rehabilitation Institute – University Health Network. As an epidemiologist, she is interested in using large health administrative and survey datasets for research. She is also committed to involving people with lived experience in research. Jen co-led the first EPLED program from 2019-2024, with Kathy McGilton, as part of the Canadian Consortium on Neurodegeneration in Aging (CCNA) Phase II. She is now leading the EPLED program, in CCNA Phase III, as part of their dementia research support hub.

  • ​Ellen Snowball (she/they), BFA, MFA

    Program Manager

    Ellen Snowball (she/they) is an interdisciplinary artist currently residing in Guelph. In her art practice, she often works with photography, videography and installation to discuss topics related to trauma, identity, illness and loss. Ellen graduated from the Interdisciplinary Masters in Art Media and Design program at OCAD University in April of 2019. In 2020, she began working with Kathy McGilton and Jennifer Bethell at KITE Research Institute, Toronto Rehabilitation Institute – University Health Network as a Research Associate with lived experience of dementia. Ellen is an EPLED program manager in CCNA Phase III as part of their dementia research support hub.

  • Emma Lanza (she/her), MLIS

    Program Manager

    Emma Lanza (she/her) is delighted to join the EPLED team as a Program Manager in Phase III of CCNA. Prior to joining the EPLED team, Emma worked as the Network Coordinator at CCNA Central Administration since 2020. Having worked with EPLED in her former role, Emma was eager to join the EPLED team on a full-time basis and help to continue to build the program in this next phase. Emma has a background in librarianship and theatre and can often be found around Montreal performing as a true-life storyteller. Emma believes in the power of sharing our stories and lived experiences, and the profound impact it has on our lives.