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Research project: Campaigning for social change: Understanding the experiences and motives of people with dementia - Dormant - Dormant

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This was a two year study exploring the motives and experiences of people with dementia who campaign for social change. The main aims of the study were to discover what motivates people with dementia to campaign and to explore the impact of such actions on a person, particularly in terms of their sense of well-being. Data were collected from participants through photo, written, and audio diaries, pre and post diary-interviews, and observing individuals ‘in action’. Data were analysed manually using content and thematic analysis techniques. This involved counting and organizing photographs into salient themes and scrutinizing interview transcripts and field notes for patterns. Sixteen participants were recruited to the study - eleven men and five women - ranging in age from 53 to 74 years (mean 64 years). All were white British; twelve had previous experience of campaigning and had worked in professional or managerial roles, while the remainder had never campaigned before and had worked in the trade or service sectors. Findings suggested that people get involved in campaign work for various reasons: to stay well and make new friends, and to try and improve society for people with dementia generally.

The aims of this qualitative study were to explore what motivates people with dementia to campaign, to understand the tactics that individuals use, and to explore how such actions impact on an individual. Fieldwork was carried out in the UK between August 2009 and August 2010. Data were collected using diary-interview method and participant observation. The traditional written diary interview method was modified to include photo-diaries and audio diaries to enable participation and to gain a more dynamic and performative understanding of the topic. Pre and post diaries interviews were conducted. With one exception these were conducted face to face in an appropriate place in or near the person’s home or campaign base. Findings revealed that people engaged in various modes of dementia activism to generate social capital for themselves and the wider dementia fraternity.

Associated research themes

  • Dementia
  • Health activism
  • Visual methods
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