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Understanding the shared experiences of creating a digital life story with individuals with dementia and their spouse

Sweeney, Laura; Wolverson, Emma; Clarke, Christopher

Authors

Laura Sweeney

Dr Emma Wolverson E.Wolverson@hull.ac.uk
Senior Lecturer Ageing and Dementia. MSc Dementia programme co-director.

Christopher Clarke C.Clarke@hull.ac.uk
Clinical Lecturer (research) and Consultant Clinical Psychologist



Abstract

Introduction
Life story books in dementia are used as a part of person-centred care. Whilst the current literature demonstrates associations between completing life story books and increased well-being, little is known about the process and how it is experienced by individuals living with dementia. Life stories are often created with a loved one, such as a partner or spouse; however, further research is required to explore experiences of life story work as a shared endeavour. Furthermore, the use of technology to create life stories is growing, with little known about how digital elements are experienced. This study aimed to understand these gaps by exploring the shared experiences of individuals with dementia and their partner/spouse creating a digital life story book.

Design and Methods
Four couples participated in the six-week creation of their digital life story book. Following this, qualitative data relating to couples’ experiences were collected via semi-structured interviews.

Findings
Thematic analysis was used to interpret data and identified four superordinate themes relating to the shared experiences of creating their digital life story book: ‘Creating a life story book is a huge undertaking’, ‘Looking back and looking forward: The emotional journey’, ‘Whose story is it and who does it belong to?’ and ‘Challenges of using technology to build the life story book’.

Conclusions
Overall, this study demonstrated that creating a digital life story was a positive experience that can support couples’ well-being, but we should not underestimate the time it will take and range of emotions experienced. The experience of using technology varied, emphasising that we must be mindful of individual preferences before considering a digital approach.

Citation

Sweeney, L., Wolverson, E., & Clarke, C. (2021). Understanding the shared experiences of creating a digital life story with individuals with dementia and their spouse. Dementia, 20(5), 1791–1813. https://doi.org/10.1177/1471301220970403

Journal Article Type Article
Acceptance Date Oct 5, 2020
Online Publication Date Oct 31, 2020
Publication Date 2021-07
Deposit Date Dec 18, 2020
Publicly Available Date Jan 7, 2021
Journal Dementia
Print ISSN 1471-3012
Electronic ISSN 1741-2684
Publisher SAGE Publications
Peer Reviewed Peer Reviewed
Volume 20
Issue 5
Pages 1791–1813
DOI https://doi.org/10.1177/1471301220970403
Keywords Dementia; Life story; Technology; Well-being' Couples; Reminiscence; Intervention
Public URL https://hull-repository.worktribe.com/output/3679878
Publisher URL https://journals.sagepub.com/doi/10.1177/1471301220970403

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