Agenda
8:30am – 9:15am PT
1. Welcome and Introductions
- Welcome from event organizers
- Opening conversation between a primary care provider and a person with lived experience of dementia (Dr. JoAnna Fay and Dr. Jim Mann)
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How do you imagine the Toolkit informing primary care practice/education/CME/structure etc.? Thinking particularly of other primary care providers who may be more resistant?
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How could this tool be most valuable within primary care practice?
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Is there anything that could be done to make the tool more useful and/or accessible?
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What are the ways we can get this message (tool) effectively to primary health care providers?
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What are ways that primary care providers could be supported to make use of this tool?
- Dr. Alison Phinney will introduce the Flipping Stigma Toolkit and share some background information about how it was created
- Forum attendees will be assigned to breakout rooms where there will be discussions around these key questions (probe for insections between stigma and cultural factors/racialization; probe for issues requiring further research):
- Conversation about what was shared during breakout rooms
- Short summary of event and closing statements
9:15am – 9:25am PT Break
9:25am – 10:25am PT
2. Introduction to the Toolkit and Breakout Rooms
10:25am – 10:35am PT Break
10:35am – 11:30am PT
3. Summary of Breakout Room Discussions and Closing Statements
Primary Care Context
In order to start building an understanding of how to support the use of the toolkit within primary care, several Toolkit feedback sessions have been held with primary care stakeholders in British Columbia.
In 2022, a continuing medical education (CME) session was held for Royal Inland Health employees. Attendees shared that the session made them more cognizant of personal biases and highlighted the importance of speaking to the patient at hand and not their caregiver. In further feedback sessions, primary care stakeholders agreed that the stories shared in the Toolkit are powerful reminders of stigma - especially when directly hearing the voices of people with lived experience.
During a feedback session with a geriatrician from Vancouver Island, we heard that the Toolkit could be used as a resource for patients and families with a new diagnosis of cognitive impairment.
Potential barriers for uptake of the Toolkit within primary care practice were also identified and included a lack of time during appointments with patients, the absence of the perspective of other primary care providers, and the already overwhelming workload facing many working in primary care.
As a result of our conversations with primary care providers, the Flipping Stigma Toolkit is currently available on BC PATHWAYS for primary care providers to share with their patients. Several community organizations in BC are currently using the Toolkit as part of their mandatory volunteer training and the Toolkit has been used to supplement learning material for students in various faculties.
Developing a Research Proposal on Addressing Stigma in Primary Care
Through the forum, we hope to gain a better understanding of how to support the use of the toolkit within the primary care settings, as well as develop a research proposal for better understanding how the toolkit and other anti-stigma interventions could work within this context. As part of this effort, we have conducted a preliminary literature review and are also currently in the process of carrying out a more systematic scoping review with the purpose of mapping existing literature on dementia stigma in primary care.
Our preliminary review found that 40% of family physicians feel unprepared to deal with people with dementia (Bacsu et al., 2020), and that while stigma is widespread in the community, it is highest amongst health professionals (Herrmann et al., 2018). In particular, this is well-documented amongst family physicians, which may be attributed to issues around inadequate training (Bacsu et al., 2020).
In terms of how to address these issues, the literature on anti-stigma interventions in dementia and other closely related domains such as mental illness suggests some important lessons:
1
Interventions must be based on a thorough understanding of the perspectives and milieu of the audience they seek to target (Ungar & Knaak, 2013).
2
Interventions must feature the experiences or stories of people that are directly impacted by stigma (Kim et al, 2019), including direct contact with people from the affected group (Corrigan, 2014).
3
Interventions must include a chance for dialogue so target audiences can process and apply learnings.
4
Interventions need to include a chance for follow-up; they should not be “one-offs”
(Corrigan et al., 2014).
5
Researchers of mental health stigma have noted the need to understand how stigma manifests in the context of Indigenous and multicultural communities
The Scoping Review
We want to know “What does the literature report about dementia stigma in primary health care?”. Our specific objectives are to:
1. Describe what the literature reports about the experience of dementia stigma in primary health care.
2. Identify interventions to address dementia stigma in primary health care.
3. Outline factors (individual, community/practitioner, societal/policy) that influence dementia stigma in primary health care.
4. Describe what the literature reports about other intersecting social inequities (e.g. mental health, racism, rural, class) in relation to dementia stigma in primary care.
We hope to further this work beyond the Forum and engage more primary care professionals.
Flipping Stigma is about challenging existing ideas about dementia-related stigma, and this forum provides a space for these discussions to occur and for us all to better understand how the Toolkit can be the most useful in the primary care context.