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.