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Talking about my experiences ... at times disturbing yet positive': Producing narratives with people living with dementia
Benbow, Susan M. Kingston, Paul
Benbow, Susan M.
Kingston, Paul
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Publication Date
2014-09-22
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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.
Citation
Benbow, S. M., & Kingston, P. (2016). 'Talking about my experiences ... at times disturbing yet positive': producing narratives with people living with dementia Dementia, 15(5), 1034-1052. DOI: 10.1177/1471301214551845
Publisher
SAGE Publications
Journal
Dementia
Research Unit
DOI
10.1177/1471301214551845
PubMed ID
PubMed Central ID
Type
Article
Language
en
Description
Series/Report no.
ISSN
1471-3012
EISSN
1741-2684