‘Talking about my experiences … at times disturbing yet positive’: Producing narratives with people living with dementia

Abstract

Background This research investigated narrative production and use with families living with dementia. We hypothesised that the process of narrative production would be beneficial to people with dementia and carers, and would elicit important learning for health and social care professionals. Method Through third sector partners, we recruited community-dwelling people with dementia and carers who consented to develop written, audiotaped or videotaped narratives. Audio-taped narratives were transcribed verbatim and handwritten narratives word-processed. After checking by participants, completed narratives were analysed thematically using qualitative data analysis computer software. A summary of the analysis was circulated to participants, inviting feedback: the analysis was then reviewed. A feedback questionnaire was subsequently circulated to participants, and responses were analysed thematically. Results Twenty-one carers and 20 people with dementia participated in the project. Four themes of support were identified: ‘relationships’, ‘services’, ‘prior experience of coping’ and having an ‘explanation for the dementia’. Three themes were identified as possible additional stresses: ‘emotions’, ‘physical health’ and ‘identity’. We suggest a model incorporating all these themes, which appeared to contribute to three further themes; ‘experience of dementia’, ‘approaches to coping’ and ‘looking to the future’. In participant feedback, the main themes identified were ‘emotions’, ‘putting things in perspective’, ‘sharing or not sharing the narrative’ and ‘actions resulting’. Conclusions Producing a narrative is a valuable and engaging experience for people with dementia and carers, and is likely to contribute to the quality of dementia care. Further research is needed to establish how narrative production could be incorporated into routine practice.