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.
Jennifer Bethell, BSc, MSc, PhD
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.
Katherine McGilton, RN, PHD, FAAN (CCNA Phase II EPLED 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
Ellen Snowball, BFA, MFA
Ellen Snowball is an interdisciplinary artist from Toronto. 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 Analyst with lived experience of dementia.