Conceptualizing citizenship in dementia: A scoping review of the literature

Abstract

Citizenship has provided an important conceptual framework in dementia research and practice over the past fifteen years. To date, there has been no attempt to synthesize the multiple perspectives that have arisen in this literature. The purpose of this paper is to explore, reflect on, and contrast, the key concepts and trends in the citizenship discourse as it relates to people with dementia. Using a scoping review methodology, forty-nine articles were identified for review. Despite the use of different descriptors, thematic analysis revealed four core themes underpinning citizenship discourse: 1) the relationality of citizenship; 2) facilitated agency and autonomy; 3) attention to stigma, discrimination and exclusion; and 4) recognition of the possibilities of identity and growth. Overall, this scoping review found a major emphasis on expanding definitions of agency and autonomy to render citizenship unconditional and inclusive of the diverse life experiences of people living with dementia. Notably, there is recognition that a more intersectional lens for embedding the subjective experience within a broader socio-political context is needed. Whilst the adoption of a citizenship lens in dementia research and practice has had real-world implications for policy and research, its exploration and use continue to be led by academics, highlighting the importance that future research involve input form people with dementia.

Making space at the table: Engaging participation of people with dementia in community development

“…Asset-based community development with its natural emphasis on strengths aligns well with a conceptual lens of social citizenship that addresses stigma, recognizes people's intrinsic capacity for meaningful participation, and supports their agency and autonomy in pursuing this kind of engagement. 28 The relational patterns and participatory practices within and across the two project sites have revealed the importance of these values and guiding principles for connecting different people in different places. Enacting social citizenship in this way has allowed individuals and organizations to bring their unique strengths and abilities to the work, while developing a shared approach and identity.…”

“…26 This rights-based perspective is reflected in the project's commitment that people with dementia would participate and contribute in a way that actively engaged their abilities and expertise throughout the entire process, rather than being merely included as passive service users or care recipients. [27][28][29] The Building Capacity Project was designed to be conducted across and within two sites. The project participants are outlined in Table 1 below.…”

“…We have taken this up, not as an abstract principle, but as a guide for action to create social structures and everyday relationships that support people's experiences of self‐empowerment, sense of belonging, and community connection 26 . This rights‐based perspective is reflected in the project's commitment that people with dementia would participate and contribute in a way that actively engaged their abilities and expertise throughout the entire process, rather than being merely included as passive service users or care recipients 27–29 …”

Participatory action research: An exploration from a Freirean perspective of research involving people with dementia

“…In particular, it draws attention to the prevalence and negative impact that stigma and discrimination have had on the lived experience, 26,27 and challenges common deficit or needs‐based understandings. Instead, the focus shifts to removing barriers that prevent people from living life to their fullest, drawing attention to peoples' rights, capabilities and strengths 28,29 . Thus, a critical question emerges: How as a society can we push back against the attitudes and practices that lead us (even unintentionally) to the exclusion of people with dementia from full participation in the world around them, including how they are involved (or excluded) in research?…”

Enacting citizenship through writing: an analysis of a diary written by a man with Alzheimer's disease

“…This approach capacitates people who, within the dominating Western neoliberal governmental regime, otherwise would be incapacitated and put out of order (Vaittinen, 2022). Furthermore, this thinking is increasingly becoming a foundation for dementia policy throughout Europe (O'Connor et al, 2022).…”