Landy, Ania

The lived experience of dementia includes loss of identity due to the negative and pessimistic social narratives that are stigmatizing and socially isolating. In the community-based participatory research (CBPR) project Raising the Curtain on the Lived Experiences of Dementia, eleven individuals living with dementia participated as ‘peer collaborators’ in weekly co-creative workshops over two years. The purpose of this study was to investigate how peer collaborators described their involvement in Raising the Curtain in relation to their social participation and ability to effect social messages about dementia. Data gathered from the workshops, including transcripts (8) and one-on-one evaluation interviews (103), were used for analysis. Research findings revealed that the participants’ engagement as peer collaborators fostered their ability to enact resistance and social citizenship, including sharing lived experiences, combating the stigma of dementia, engendering inclusion and belonging, and promoting advocacy. Using CBPR to foster social citizenship suggests that meaningful and purposeful approaches to leisure are possible for individuals living with dementia.

Community-based participatory research (CBPR) is used increasingly in leisure research to foster equitable relationships and social change, yet individuals who disseminate CBPR remain fraught with the challenges of upholding CBPR’s central values and principles in the daily practices of CBPR. In this analysis we examine the promises and challenges of integrating mental health ‘peer’ research participants into all phases of the CBPR process. While peers’ experiences were largely positive, reflections from team members revealed ongoing tensions in attending to power differences between academic researchers and peers - what the research team called “self-other” constructions. Our efforts to unsettle ‘self-other’ constructions built peers’ capacity and personal growth but perpetuated role distinctions, power inequalities, and tensions around structure and control. These tensions are highly instructive for leisure researchers “to reimagine leisure studies and its role in helping society understand, confront, and address complex social challenges” (Glover, 2015, p. 1).

The chapter, "Raising the curtain: at the intersection of education, art, health care and lived experience of dementia" was written by the listed authors including Colleen Reid (Douglas College Faculty). This chapter uses the case study of Raising the Curtain (RTC), a community based participatory research project (CBPR), to explore the opportunities and insights that resulted from an education – arts – health care collaboration. RTC occurred in a long-term care facility located in rural British Columbia and was a collaboration between researchers, artists, health care workers, and people with lived experience of dementia. The project’s goals were to: (1) increase understandings of the lived experience of dementia by highlighting the sociocultural constructions of the disease; (2) uncover innovative strategies for building an education – art – health care collaboration; and (3) spawn creative and innovative approaches to participation, engagement and advocacy for individuals with lived experience of dementia. Insights gained from RTC point to the promise of integrating creative and social justice-oriented community engagement into leisure practice. Ultimately RTC created a ‘third space’ – one that achieved a true nexus between education, art, and health care – and provided a vision for advancing leisure practice in the context of dementia-care in a long-term care (LTC) facility. --From publisher description.