Re-claiming citizenship through the arts

Abstract

Healthcare literature, public discourse, and policy documents continue to represent persons with dementia as "doomed" and "socially dead." This tragedy meta-narrative produces and reproduces misunderstandings about dementia and causes stigma, oppression, and discrimination for persons living with dementia. With few opportunities to challenge the dominant discourse, persons with dementia continue to be denied their citizenship rights. Drawing on the concept of narrative citizenship, we describe a community-based, critical arts-based project where persons with dementia, family members, visual and performance artists, and researchers came together to interrogate the tragedy discourse and construct an alternative narrative of dementia using the arts. Our research demonstrates the power of the arts to create transformative spaces in which to challenge dominant assumptions, foster critical reflection, and envision new possibilities for mutual support, caring, and relating. This alternative narrative supports the reclamation of citizenship for persons living with dementia and fosters the relational citizenship of all.

Critical reflections on methodological challenge in arts and dementia evaluation and research

“…Assessment of artistic quality, aesthetic experience, cultural contributions, process, social impact and economic value appear rare in the arts and dementia literature. Social or experiential effects of the arts on individuals with dementia have been explored using methodologies including ethnography (Swinnen, 2014), interpretive phenomenological analysis (Gregory, 2011), personal narrative analysis (Fels & Astell, 2011) and participatory critical arts-based enquiry (Dupuis, Kontos, Mitchell, Jonas-Simpson, & Gray, 2016). However, such distinctive approaches are seldom employed in evaluating the impact, outcomes or implementation of arts and dementia activities.…”

Transcending the Tragedy Discourse of Dementia: An Ethical Imperative for Promoting Selfhood, Meaningful Relationships, and Well-Being

“…It is the authors' contention that the dominant view of dementia is grounded in a "tragedy discourse," which emphasizes the loss of both ability and identity [3,4], and that this view directly harms people living with dementia above and beyond the effects of the pathology of any disease. In this paper, we first show that the negative impact of the tragedy discourse can be readily understood by listening to people living with dementia talk about their experiences and by considering how they are commonly characterized in the public sphere.…”

Improving social inclusion for people with dementia and carers through sharing dance: a qualitative sequential continuum of care pilot study protocol

“… 17 18 There is also evidence that arts-based programmes can enliven the individual living with dementia, which studies have linked to improvements in person-centred care and relational citizenship. 8 9 Indeed, Dupuis et al 19 argue that arts-based approaches can create transformative spaces that challenge dominant ideas about dementia, and support the development of new forms of mutual support, caring and relating between persons living with dementia and others.…”