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Panel Session: Involving People with Dementia in Research: Issues, Challenges and Solutions

Alex Mihailidis, PhD
Directeur scientifique, AGE-WELL
Jim Mann
personne vivant avec la démence et défenseur; Membre du comité de gestion de la recherche de AGE-WELL
Arlene Astell, PhD
Chaire de recherche en gestion communautaire de la démence, Centre des sciences de la santé mentale Ontario Shores; chercheure AGE-WELL
Julie Robillard, PhD
Professeure adjointe, Neurologie, Université de Colombie Britannique
Saturday, April 28, 2018 - 14:30 to 15:30
Location : 
Place du Canada

Session Description:

There is growing recognition of the importance of involving people with dementia in research. The question is, how to make this happen when there are unique challenges related to this population? Hear the latest thinking from researchers on the front lines, and strategies for overcoming challenges. This session will also address public/patient views on ethical issues in dementia research, and learnings from a Canadian study that calls for reforms in current approaches to dementia research.

This session is convened by the AGE-WELL Network of Centres of Excellence.

Speaker Biographies:

Alex Mihailidis is the Barbara G. Stymiest Research Chair in Rehabilitation Technology at the University of Toronto and Toronto Rehab Institute. He is also the Scientific Director of the AGE-WELL Network of Centres of Excellence, which focuses on the development of new technologies and services for older adults. He is a Professor in the Department of Occupational Science and Occupational Therapy (U of T) and in the Institute of Biomaterials and Biomedical Engineering (U of T), with a cross appointment in the Department of Computer Science (U of T). He has been conducting research in the field of pervasive computing and intelligent systems in health for the past 15 years, having published over 150 journal papers, conference papers, and abstracts in this field. He has specifically focused on the development of intelligent home systems for elder care and wellness, technology for children with autism, and adaptive tools for nurses and clinical applications. Dr. Mihailidis is also very active in the rehabilitation engineering profession, currently as the Immediate Past-President for RESNA (Rehabilitation Engineering and Assistive Technology Society of North America). He was also named a Fellow of RESNA in 2014, which is one of the highest honours within this field of research and practice.

Jim Mann was diagnosed with Alzheimer's at the age of 58 (2007) and now volunteers his time to ‘advocate to educate’. With a focus on living well with dementia, he attempts to reduce stigma and shatter stereotypes using insight gained personally and as a care partner for his mother who also lived with dementia. Jim completed a six-year term in 2015 as board member of the Alzheimer Society of Canada (ASC) and in his home province of BC he also had a six year term on their board of the provincial Alzheimer Society (ASBC) ending in 2014. Additionally, Jim is a member of the AGE-WELL NCE Research Management Committee, the Patient Council, BC SUPPORT Unit (Advancing patient-oriented research) and an Advisory Board member of the STAR Institute. He is a member of the eHealth Integrated Curriculum Working Group through the Office of the Vice-Provost Health at the University of BC, and an advisory committee member researching Health Care Consent, Aging and Dementia: Mapping Law and Practice in BC with the Canadian Centre for Elder Law. He wrote the Foreword for a book by Drs. Ruth Bartlett and Deb O’Connor, Broadening the Dementia Debate: Towards Social Citizenship and is co-author with Dr. Elaine Wiersma, Dr. Deb O’Connor, et al. of Creating space for citizenship: The impact of group structure on validating the voices of people with dementia (Dementia). Jim is co-author with Dr. O’Connor, et al. on Stigma, discrimination and Agency: Diagnostic disclosure as an everyday practice shaping social citizenship (Journal of Aging and Mental Health) and is co-author of Conducting Action Research with People Living with Dementia (Action Research Journal) under review, with Dr. Lillian Hung.