Citizenship as Distributed Achievements: Shaping New Conditions for an Everyday Life with Dementia

Abstract

Citizenship for people with a disability has become a notable subject within disability studies, but dementia has only sparingly been included in these studies. However, an important international debate on citizenship for people with dementia is emerging, highlighting rights, empowerment, agency, and new socio-political understandings. Yet, even though these studies often entail a relational understanding, they tend to perceive citizenship as allocated statically to individuals. This article contributes to the debate by conceptualizing relational citizenship as the distributed achievements of care-collectives consisting of a complex set of socio-material agents, including the person with dementia and the disease. Rather than adding more knowledge about experiences of dementia, the article develops an understanding of the critical mechanisms producing citizenship for all, and of care-collectives as potential facilitators for such distributed achievements. The results indicate that citizenship is a malleable and precarious enactment that needs continuous nourishment to be maintained, and that localized knowledge about the emergence and development of care-collectives is crucial for this maintenance and, hence, for shaping decent conditions for an everyday life with dementia.