Challenging Stigma and Enacting Citizenship Through Liberatory-Relational Songwriting with People Living with Dementia

Abstract

People living with dementia (PLwD) frequently experience stigma, social exclusion, and limited opportunities to participate in creative and collaborative processes that centre their voices and lived experiences. Dominant biomedical and tragedy narratives of dementia often emphasize decline, dependency and the total loss of self, overlooking the relational and creative capacities of PLwD. This is especially true for PLwD later in the disease progression who are written off and denied their social citizenship rights, including opportunities to contribute to their own and others’ lives. In response to these limitations, this dissertation explores how collaborative songwriting rooted in liberatory and relational processes supports the enactment of relational citizenship and challenges stigmatizing discourses of dementia. Grounded in relational and critical theoretical perspectives, including relational caring philosophy, relational citizenship, and community and music-centred approaches to music therapy, this research employed liberatory/activist arts and critical arts-based inquiry to facilitate a collaborative songwriting project with nine PLwD in a residential care home in Ontario, Canada. Over nine weeks, the songwriters engaged in a series of songwriting sessions culminating in the public release of an original song, Wisdom and Respect, and an accompanying short film.

Analysis of the songwriting sessions illustrated how the liberatory, relational process created opportunities for songwriters to share their personal histories and experiences, attend to one another, negotiate creative decisions, and engage in critical dialogue, reflection, and collective meaning-making through music. Through this analysis, the Liberatory-Relational Dementia Songwriting Framework was developed, identifying key relational literacies (i.e., processes and ways of being and relating in the world that support embodied capacities and cultivate opportunities for relational connections to flourish) that supported the songwriting process. These relational literacies include relational knowledging, relational attuning, and relational decision-making. The research also demonstrated how the song and film functioned as a counter-narrative to dominant discourses of dementia by highlighting the relational, creative, and expressive capacities of the songwriters. Preliminary feedback from audience members at the community release party indicated shifts in perceptions of the capacities and personhood of PLwD, with some participants expressing intentions to change how they interact and engage with PLwD in their own lives.

This research contributes theoretical, methodological, and practical insights to dementia studies, music therapy, and leisure studies. It challenges dominant biomedical conceptualizations of leisure, and specifically music in the dementia context, and instead offers a liberatory approach that recognizes and supports the continued and evolving capacities of PLwD later in the disease progression to engage in social justice projects. As both a theory and a relational practice, relational citizenship involves knowing and being known, belonging and solidarity, attunement and recognition, and the agency to act together. The Liberatory-Relational Dementia Songwriting Framework created opportunities for these dimensions to be expressed and sustained within the group. By documenting a collaborative songwriting methodology grounded in relational and liberatory arts-based approaches, this dissertation offers a framework for researchers, practitioners, and communities seeking to use participatory arts to challenge stigma and support the enactment of relational citizenship with PLwD, including those later in the disease progression.