Relational citizenship: supporting embodied selfhood and relationality in dementia care

Abstract

We draw on findings from a mixed-method study of specialised red-nosed elder-clowns in a long-term care facility to advance a model of 'relational citizenship' for individuals with dementia. Relational citizenship foregrounds the reciprocal nature of engagement and the centrality of capacities, senses, and experiences of bodies to the exercise of human agency and interconnectedness. We critically examine elder-clown strategies and techniques to illustrate how relational citizenship can be supported and undermined at the micro level of direct care through a focus on embodied expressions of creativity and sexuality. We identify links between aesthetic enrichment and relational practices in art, music and imagination. Relational citizenship offers an important rethinking of notions of selfhood, entitlement, and reciprocity that are central to a sociology of dementia, and it also provides new ethical grounds to explore how residents' creative and sexual expression can be cultivated in the context of long-term care.

Sustaining care for a parent with dementia: an indefinite and intertwined process

“…Moreover, we advocate for the use of broader contextual frameworks when investigating care and caring. Adopting a citizenship lens (Bartlett & O’Connor, 2007; Kontos, Miller, & Kontos, 2017; Kontos, Grigorovich, Kontos, & Miller, 2016), for example, would recognize the political nature of dementia care and promote the rights and opportunities of PwDs and adult children who experience different forms of vulnerability as care is sustained.…”

Alzheimer's Patient Organizations' Role in Enabling Citizenship Projects: A Comparison of the USA, Germany, and the UK

“…Citizenship is thus seen as a status attached to rights as well as a practice through which individuals relate to the community and the state (Prior et al, 1995). Yet the category of citizen is criticized for emphasizing cognitive knowledge (Kontos et al, 2017) that alienates for instance, people with dementia (Post, 2000). Therefore, in order to recognize how AD changes the process of constructing one's citizenship identity, it is important to recognize the different processes influencing citizenship formations.…”

Open to All: Dementia, Creativity, and Open Ecosystem Innovation

“…The affirmation of this status comes in light of the greater risk of breaches in human rights present for older people dependent on care services (Equality and Human Rights Commission, 2011, p. 19; Boaden, 2016), but also the ways in which increasingly timely diagnoses now allow people to consider the care they wish to receive and to which they have the right (placing a degree of emphasis on consumer empowerment and innovation). Underscoring this is a broadening of "personhood" as the lens through which dementia has been addressed by research and practice to include perspectives on citizenship, a position that opens up discussion on issues of discrimination and social inclusion, one that is more inclusive of the full complexity of living with a dementia diagnosis today (e.g., Bartlett and O'Connor, 2007;Kontos et al, 2017). Seen through the lens of Dementia Connect's work, this highlights the need to re-think the "patient status" of people living with dementia, the complexity of attaining ethical research approval when partnering with universities in collaborative work, the role of fair compensation and IP protection for all participants, and how informed-as well as continued-consent is to be managed as a function of the dementia journey.…”