Henderson, Julia

From "The Tragic Self" to "The Empowered Self": How leisure spaces can foster narrative agency for people with lived experience of dementia

Digital Document

Harmful cultural narratives equate dementia with a loss of self, citizenship, narrative agency. Although leisure activities are widespread in dementia programs, less attention is paid to leisure’s social justice orientation and potential to resist dominant narratives. Raising the Curtain on the Lived Experiences of Dementia was a five-year community-based participatory research study, guided by the values and practices of social citizenship (Bartlett & O’Connor, 2007, 2010). The project explored how individuals living with dementia made sense of their lived experiences individually and collectively. Analysis of participants’ accounts of their dementia revealed the tragic self and the empowered self as two over-arching themes, showing how participants’ both adopted and resisted dominant dementia narratives. Insights suggest leisure spaces have potential to foster the narrative agency of individuals living with dementia to enable expression of the fullness of their experiences including powerlessness and agency; uncertainty and certainty; dread and joy; conformity and resistance.

Virtual collaborative creative engagement in a pandemic world: Creative connection for older adults with lived experience of dementia

Digital Document

Introduction: Older adults were disproportionately affected by COVID-19, and isolation and loneliness became key risk factors for mental illness and decreased quality of life. Older adults with lived experience of dementia and their care partners experienced isolation, loneliness, anxiety and depression, already heightened due to social stigma. Reduced access to resources was a notable problem. Objective: This Canadian qualitative study investigates the Raising the Curtain on the Lived Experience of Dementia (RTC) Project's virtual turn in program delivery during the pandemic, asking “How did virtual collaborative creative engagement (CCE) impact well-being for people living with dementia and their care partners?”; and “What are key elements of RTC's unique virtual CCE approach?”Methods: The study employs reflexive thematic analysis to analyse interviews and focus groups with the project's artist facilitators, researchers, peer collaborators living with dementia, and their care partners. Findings: Themes describe key elements of RTC's unique approach to virtual CCE and include: “Adjusting Expectations and Adapting to Technology”; “Re-imagining Creative Engagement in Virtual Space”; “Sustaining Reciprocal Caring, Learning, and Support”; “Disrupting Stigma and Welcoming a Wider Audience”; and “Supporting Well-being through Empowerment, Community, and Creativity.” Discussion: Findings offer new perspectives on how virtual CCE not only has the potential to decrease loneliness and isolation and associated mental health risks for older adults living with dementia and their care partners, but also can work to disrupt stigmatizing representations of dementia, promote inclusion, and enhance citizenship.

Digital Document

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.

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