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.

Keywords:

• dementia
• citizenship
• campaigning
• identity
• psycho-emotional

Acknowledgements

The author would like to thank all of the individuals and organisations involved in this study, Dr John Chatwin and Dr E. J. Milne for research assistance, Prof. Catherine Pope and Mr Larry Gardiner for their encouragement and helpful comments on an earlier version of this paper, and two anonymous reviewers for comments.