Thursday, October 18, 2018 | 1:00pm – 4:00pm
Registration Fee: $20 (includes mid-afternoon coffee break)
The organizers of this workshop are committed to ensuring it is accessible to all who would like to attend. Registration fees may be subsidized in some circumstances. Please contact the Alzheimer Society of BC for more information at firstname.lastname@example.org or 604-742-4907.
In 2011, the Canadian Institute for Health Research launched its Strategy for Patient Oriented Research grounded in the view that health research needs to assess interventions and outcomes considered important by patients. This current emphasis on patient engagement represents a cultural shift wherein patients participate in health research as advisors, partners, collaborators, and/or co-researchers from study design to knowledge translation. In the context of individuals living with dementia, the notion of patient engagement is especially critical, considering their historical exclusion from research. Yet, it is known that people with dementia and their care partners have a wealth of knowledge and experience—they are experts in the lived experience of dementia—and therefore have important perspectives to contribute.
Despite the potential benefits of patient engagement, there are several complexities and challenges unique to dementia research that cross-cut ethical and methodological domains. For example, balancing opportunities for engagement with requirements from research ethics boards; the inclusion of care partners’ perspectives whilst promoting individual agency; and developing person-centred methods that accentuate the individual’s abilities/capacities when communication may be impeded.
At this half-day session, we will explore the what, why, and how of the respectful and meaningful inclusion of people with dementia and their care partners in qualitative and quantitative research. Participants will:
- Learn about and discuss current strategies for inclusion;
- Develop a framework that lays out what ‘dementia friendly’ research could look like, including: what is important about it and why, and potential criteria, possibilities, and opportunities;
- Develop tools, tips, and strategies that address ethical and methodological challenges;
- Inform a position paper related to practically and ethically informed recommendations that will be disseminated to workshop participants, research ethics boards, and shared thru the Alzheimer Society of B.C.’s and the Centre for Research on Personhood and Dementia’s websites.
- Be invited to join an ‘innovation hub’ – a network of researchers, individuals living with dementia, care partners, advocates and decision-makers – that works toward dementia-friendly research practice in B.C. and across Canada.
Who Should Attend?
- Persons living with dementia & their care partners
- Decision makers
- Governmental/non-governmental organizations
This workshop is lead in conjunction with the Alzheimer Society of B.C. and members of the Centre for Research on Personhood in Dementia (CRPD), an interdisciplinary research collaboratory who are committed to improving understanding and support for people living with dementia, their families, and their communities. The workshop will be moderated by the Society’s CEO Maria Howard and co-facilitated by Dr. Alison Phinney and Dr. Gloria Puurveen of the CRPD, and presenters will include individuals with dementia and clinical researchers.