The Engagement of People with Lived Experience of Dementia (EPLED) is a program introduced in 2020 for the Canadian Consortium on Neurodegeneration in Aging (CCNA) phase II.
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 translation.
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.
Program Leads
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Co-lead
Jennifer Bethell is an Affiliate Scientist at KITE Research Institute, Toronto Rehabilitation Institute – University Health Network. As an epidemiologist and health services researcher, she is interested in using large health administrative and survey datasets for research and reporting on health outcomes. To date, her work in this area has been focused on topics related to mental health, injuries and prescription medication use and how these issues influence health across the life course.
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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.
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CCNA Phase II co-lead
Katherine McGilton is a Senior Scientist and Research Division Head with KITE Research Institute, Toronto Rehabilitation Institute – University Health Network. She is also a Professor at the University of Toronto’s Lawrence S Bloomberg Faculty of Nursing and is currently the co-lead of the Quality of Life Theme for the Canadian Consortium on Neurodegeneration in Aging (CCNA). She has spearheaded the International Consortium of Professional Nurses in Long-Term Care Facilities (LTCF) founded in 2011 – focused on building capacity to contribute to interdisciplinary research, practice, education and policy in LTCF.
Katherine McGilton at Toronto Rehab
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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. In her spare time Emma enjoys seeing, listening, and most importantly singing along to musicals, reading, watching silly television, and hanging out with her cat Scout.
