Everyone Is Invited to the Table: Supporting Dementia-Friendly Research
How might we make research spaces more dementia-friendly so that they foster meaningful collaboration and inclusion of people with dementia?
In dementia research, there is a growing emphasis on generating meaningful research collaborations with people with lived experiences (PWLE, who can be people living with dementia or caregivers). This project aims to fosters interdisciplinary and collaborative capacity in dementia research projects in order to transition from a culture of participation to collaboration.
This project, in collaboration with the Alzheimer Society of BC, included 3 phases:
- A research study to learn about existing approaches to interdisciplinary research teams including the involvement of PWLE.
- The design and development of a workbook for researchers to enhance reflection on participatory practices and the inclusion of PWLE on research team.
- A webinar series and brochure co-designed by PWLE to share information about what it is like to be involved in research and to encourage others to participate as well.
Engagement Approach
The initial participatory research study took place in collaboration with the Health Design Lab, the Alzheimer Society of B.C. and two researchers, Dr. Gloria Puurveen (University of British Columbia) and Dr. Jodie Gawryluk (University of Victoria). A group of interdisciplinary researchers, practitioners and people with lived experiences were invited to this participatory study to share their experiences and together:
- Explore existing interdisciplinary research practices, tools and strategies that promote partnerships with people with lived experience to amplify their knowledge and foster inclusivity in research.
- Identify gaps and opportunities to further develop person-centered and collaborative research tools and practices.
The workshop dialogue took place virtually as part of the Dementia Lab Conference in January, 2021. Thirty-eight participants from interdisciplinary backgrounds and experiences including researchers, artists, creatives, designers and PWLE, gathered from different parts of the world to attend these sessions. The workshops were designed to invoke the feeling of a gathering around a table, following an underlying theme: Everyone is Invited to the Table. This was represented by visual cues depicted on an interactive online platform and the use of prompts to encourage participants to share their experiences, expertise and knowledge. Design methods such as envisioning, imagining, visualizing and drawing were adopted to facilitate dialogue and bring out tacit knowledge held by participants.
Data analysis revealed the following four strategies that can be adopted by dementia researchers to foster collaborative and inclusive research engagement and outcomes:
- Relational research process: Perceiving people with lived experiences and the larger dementia community as a part of a neighbourhood where people are intertwined and connected through long-standing relationships.
- Power Dynamics: Recognizing PWLE as experts and collaborators throughout the research process to break down hierarchies and engage with participants as co-researchers and co-creators
- Paced research: Designing a research process that affords slow paced engagement to allow for flexibility and adaptability throughout each phase of research.
- Generative and continuous: Ensuring that research projects and phases within a research project are informed by past projects and continually feed into ongoing or subsequent projects.
Knowledge Sharing
Based on insights gained through the research study, a workbook was created that showcases dementia-friendly participatory research practices. The purpose of this workbook is to foster interdisciplinary and collaborative capacity in dementia research projects in order to transition from a culture of participation to collaboration. This workbook is intended to drive self-reflection amongst initiators and leaders of dementia related research projects to develop research practices that are grounded in collaboration and recognize people with lived experiences as experts, inviting them to join research teams as co-researchers, collaborators, leaders, and initiators to develop dementia-friendly practices.
Workbook: Collaborate Gather Share
In addition to creating the workbook, PWLE who are currently involved as co-researchers on projects, collaborated with our team to lead a webinar series highlighting the experiences of people with dementia as researcher team members. This created a platform to share about their experiences first hand, and to encourage others with lived experience to become involved as well. To further this initiative, PWLE co-designed a brochure for Alzheimer Society of BC which emphasizes the importance of collaboration between researchers and people living with dementia.
Brochure: Opening a Door to Collaborative Research
Project Information: https://alzheimer.ca/bc/en/research/dementia-friendly-research
Project Collaborators
Partners:
Alzheimers Society of BC
Dr. Gloria Puurveen, University of British Columbia
Dr. Jodie Gawryluk,University of Victoria
Funder:
Alzheimers Society BC
Mitacs
HDL Project Team:
Marcia Higuchi
Garima Sood
Caylee Raber
Nadia Beyzaei
Timeline:
Sep 2020 – May 2022
