Social citizenship when living with dementia: A qualitative meta-study

Background: Dementia has been labelled as a condition leading to ‘prescribed disengagement’ which negatively affects a person’s ability to remain an agentic citizen. Social citizenship has become a central focus within dementia studies and occupational science, with a view of people with dementia (PWD) as capable and active agents. However, PWD still experience stigmatization and exclusion from valued occupations and being treated as passive recipients, preventing them of practicing citizenship. Aim: The aim of this meta-study was to investigate what PWD perceive to enable or hinder social citizenship in their everyday occupations. Method: A qualitative meta-study was undertaken. A systematic search was performed in six databases and additional reports were found in the reference lists of the included reports. The meta-study included 14 reports with publication dates from January 2012 to April 2021. Results: The analysis identified four themes reflecting what may enable or hinder social citizenship in PWD’s everyday lives: 1) Having rights acknowledged and seizing self-empowerment, 2) Experiencing stigmatization and marginalization, 3) Belonging and interdependence, and 4) Connecting with places of community and continuity. Conclusion: The review identifies how contextual forces relating to society, culture, justice, and everyday life can promote and prevent a sense of social citizenship when living with dementia. This meta-study calls for dementia inclusive communities that provide occupational opportunities and view PWD as citizens in their own right, with fundamental rights to participate and contribute as valuable members of society.