DAY 4 – OCTOBER 15, 2021

SESSION 16         TALK – Quality-of-life solutions developed with and for people living with dementia

Collaboration with people living with dementia helps researchers to address the challenges and needs of people living with dementia in ways that are meaningful and impactful. This session highlights two projects that used co-design with an aim to improve the experience of people living with dementia and their families. The first presentation will describe working with people living with dementia and family carers to develop an online educational resource called the Driving and Dementia Roadmap (DDR). The second presentation will describe the co-design process used to develop a multi-component program, The Dementia Lifestyle Intervention for Getting Healthy Together (DELIGHT) that supports the health and well-being of people living with dementia and their family care partners.

MODERATOR:                            Shusmita Rashid

SPEAKERS:                         Elaine Stasiulis, Laura Middleton

SESSION 17          PANEL People with Lived Experience and CCNA Researchers Collaborating to Enhance Research

In this session, you will hear about the CCNA Engagement of People with Lived Experience of Dementia (EPLED) cross-cutting program and, in particular, the EPLED Advisory Group composed of people from across Canada with lived experience of dementia. Advisory Group members are engaged in multiple CCNA activities and research projects. Jennifer Bethell, Carrie McAiney and two Advisory Group members, Christine Thelker and Tony Leamon, will discuss one such project: “Forward with Dementia”, which aims to develop and evaluate an intervention to improve the dementia diagnosis experience and the supports provided following a diagnosis.

MODERATOR:                Ellen Snowball

PANELISTS:                        Jennifer Bethell, Carrie McAiney, Christine Thelker, Tony Leamon

SESSION 18          SPECIAL CLOSING SESSION

Join us for an exciting event finale that will be one to remember!

This live session will be divided into three parts.

Part 1: Announcement of the Trainee Poster Competition winners.

Part 2:  Special Guest Talk

Our guest speaker Jeffrey Crelinsten, PhD, will present his thoughts on the future of research in Canada with a talk tailored especially for our CCNA 2021 Partners Forum and Science Days.

NAVIGATING CANADA’S EVOLVING RESEARCH LANDSCAPE

 A talk by Jeffrey Crelinsten, PhD, President and CEO, The Impact Group, and Publisher and CEO, Re$earch Money.

Dr. Jeffrey Crelinsten has been studying science, technology and society for over 30 years, as an academic, writer, historian, communicator, consultant and publisher. In 1987 he co-founded The Impact Group, a consulting firm specializing in science, technology and innovation policy, communications and education. In 2001 he acquired Re$earch Money, Canada’s leading publication on science, technology, innovation and investment. He founded the annual Re$earch Money Conference, which examines policy issues relevant to the research, policy, innovation and investment communities. The conference brings together leaders and practitioners from Canada and abroad.

Jeffrey is also a Senior Research Associate at the Innovation Policy Lab, Munk School of Global Affairs, University of Toronto. His research is primarily focused on the nature of innovation, science and innovation policy, innovation ecosystems and innovation culture.

Jeffrey received his B.Sc. in physics from McGill University, his M.Sc. in astronomy from the University of Toronto and his Ph.D. in history of science and science policy at the University of Montreal.

Part 3

The stage is yours

What do you think of the problems and solutions presented by Dr. Crelinsten?

Participate in an informal and lively discussion moderated by CCNA’s Associate Scientific Director Natalie Phillips. Your voice and ideas are crucial for the future of research on dementia.

BIOS

SESSION 16

Shusmita Rashid is Senior Knowledge Mobilization Manager at the Centre for Aging + Brain Health Innovation (CABHI) and Associate Director at Rotman Research Institute at Baycrest. Shusmita connects community partners with the research, health, and innovation eco-systems, to help move research and innovation from promising ideas to uptake and adoption for real-world impact. Applying her extensive experience of using Implementation Science to design, implement, and evaluate innovative programs, Shusmita leads CABHI and RRI’s KM and Community Engagement strategies. As the former Research Manager of the Team for Implementation, Evaluation, and Sustainability at the Knowledge Translation Program at the Li Ka Shing Knowledge Institute at St. Mike’s, Shusmita led the implementation of several large-scale health service research projects. Shusmita is passionate about practical applications of KT and Implementation Science to achieve health, social, and economic outcomes and has delivered training workshops across the globe, including WHO-supported workshops in Uganda and Ethiopia. Shusmita holds a BSc. In Human Biology from University of Toronto and MPH from University of Manchester.

Elaine Stasiulis is the Research Associate for Team 16 of the Canadian Consortium in Neurodegeneration in Aging (CCNA). As a qualitative social science health researcher, she supports the team in a variety of projects related to driving and dementia. Elaine is also a PhD candidate at the Institute of Medical Science of the University of Toronto.

Laura Middleton is an associate professor in the Department of Kinesiology at the University of Waterloo, a research scientist at the Schlegel Research Institute for Aging, and an affiliate scientist at the Toronto Rehabilitation Institute-KITE. Her research aims to identify strategies to prevent dementia and promote wellbeing and independence among those living with dementia. She focuses on the influence of lifestyle and specifically on the impact of exercise alone or in combination with other therapeutic approaches (e.g., cognitive training or a healthy diet). She integrates epidemiological, experimental, clinical trial, and qualitative approaches towards this aim. Recent projects have used a participatory approach by involving people living with dementia, health care professionals, and community service providers as co-researchers to create accessible and effective solutions to support the well-being of people living with dementia in Canadian communities.

SESSION 17

Jennifer Bethell is an Affiliate Scientist at The KITE Research Institute (University Health Network) and an Assistant Professor (Status-only) at the Institute of Health Policy, Management and Evaluation (University of Toronto). She co-leads the Canadian Consortium on Neurodegeneration in Aging (CCNA) Engagement of Lived Experience of Dementia (EPLED) cross-cutting program with Dr. Kathy McGilton. As an epidemiologist, her research has used large health administrative and survey datasets for research on topics related to mental health, injuries and prescription medication use. She is also interested in the relationship between social connection and health for older adults.

Ellen Snowball 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 identity, illness and loss. After her mother’s passing from early onset Alzheimer disease in 2017, she began to create a large-scale interactive installation dedicated to dementia awareness. 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 Toronto Rehabilitation Institute as a Research Analyst with lived experience of dementia. As part of her role, Ellen manages and provides support to the Engagement of People with Lived Experience of Dementia (EPLED) Advisory Group, as part of the Canadian Consortium on Neurodegeneration in Aging. She is passionate about the arts, stakeholder engagement and social justice for people with lived experience of dementia.

Carrie McAiney is an Associate Professor in the School of Public Health and Health Systems at the University of Waterloo, Schlegel Research Chair in Dementia at the Schlegel-UW Research Institute for Aging, and Scientific Director of the Murray Alzheimer Research and Education Program. Carrie also serves as the KTE Co-Lead for the CCNA, and is a co-principal investigator on CCNA’s Team 19 – Research on the Organization of Health Services for Alzheimer’s (ROSA). As a health services researcher, Carrie works collaboratively with persons living with dementia, family care partners, providers and organizations to evaluate the impact and implementation of interventions and approaches that aim to enhance care and support for individuals living with dementia and their family members, and to improve the quality of work life for dementia care staff.

Christine Thelker currently resides in Vernon, British Columbia, Canada and was diagnosed with vascular dementia in 2015. Christine has a background working as a care aid for people with dementia in long-term care facilities. Since her diagnosis, she has become active in advocating for people with dementia and has spoken publicly at the Alzheimer Disease International conference in 2018 and at the Conference of the State Parties in New York at the United Nations in 2019. She is currently member of the Dementia Alliance International and Dementia Advocacy Canada and just recently published a book about living with dementia, titled “For This, I am Grateful”. Christine joined the CCNA’s Engagement of People with Lived Experience of Dementia in June 2020 and her research interests include, but are not limited to, dementia, long-term care, living alone with dementia, human rights, and advocacy. She enjoys spending her spare time exploring nature and taking photographs. Christine’s book is available on Amazon and in book stores.

Tony Leamon currently resides in Port-aux-Basques, Newfoundland and Labrador, Canada and works as a speech language pathologist at Western Health, where part of his role is to provide care to people with dementia in long-term care. Tony’s father, Tom Leamon, was diagnosed with vascular dementia in 2011 and later moved into a long-term care home. Tony currently sits on a Provincial Advisory Council as a patient advisor for Patient Oriented Research (POR) and is interested in promoting the inclusion of patients in research in order to improve health outcomes. Tony joined the CCNA’s Engagement of People with Lived Experience of Dementia in June 2020, his research interests include, but are not limited to, long-term care, and vascular dementia. He enjoys spending time walking and hiking with his wife and daughter.