Citizenship in action: the lived experiences of citizens with dementia who campaign for social change

Abstract

This article examines the experiences of citizens with dementia who campaign for social change, with a particular focus on the effects of campaigning on citizenry identity and psycho-emotional well-being. In diary-interviews, 16 people with dementia recorded and described their experiences of campaigning. Findings revealed that although campaigning can be energising and reaffirming of citizen identity, because it (re)located a person within the realm of work, individuals may experience dementia-related fatigue and oppression linked to normative expectations about what someone with dementia ‘should’ be like. The discussion is linked to critical debates within disability studies about the psycho-emotional aspects of impairment and disability, and concludes that the struggle for citizenship has only just begun for people with dementia.