Exploring good practice in life story work with people with dementia: The findings of a qualitative study looking at the multiple views of stakeholders.

Kate Gridley,Yvonne Birks,Gillian Parker

doi:10.1177/1471301218768921

Abstract

It became apparent through our focus groups that, when people talk about 'life story work', different people mean different things. This related to both process and outcomes. In particular, a person with dementia may have very different views from others about what life story work is for and how their life story products should be used. There was general agreement that a good practice approach would be tailored to the individual needs and preferences of the person with dementia. However, in practice many settings used templates and the process was led by staff or completed by family carers. Conclusion We produced nine key features of good practice which could be used to guide the life story work process. Key elements include the recognition that not everyone will want to take part in life story work and that some people may even find it distressing; the importance of being led by the person with dementia themselves; the need for training and support for staff, carers and volunteers; and the potential for life story work to celebrate the person's life today and look to the future.

Highlights

Despite growing international interest in life story work as a tool for personcentred dementia care, there is little agreement on what constitutes good practice and little evidence from the perspectives of people with dementia or their family carers
We focus primarily on the findings from focus groups which explored the multiple views of stakeholders on life story work, which formed part of the development stage to define and understand good practice in life story work
When findings from the focus groups were available we met with a subgroup of these advisers to discuss our initial interpretations and further develop the analysis. It became apparent through our focus groups that, when people talk about ‘life story work’, different people mean different things

Summary

Introduction

Despite growing international interest in life story work as a tool for personcentred dementia care, there is little agreement on what constitutes good practice and little evidence from the perspectives of people with dementia or their family carers. Ten focus groups were held with 73 participants: four groups of people with dementia (25 participants); three with family carers (21 participants); and three with staff, professionals and volunteers with experience of life story work (27 participants). Key elements include the recognition that not everyone will want to take part in life story work and that some people may even find it distressing; the importance of being led by the Keywords life story work, dementia, good practice, person centred, qualitative, stakeholders. Life story work involves helping people to record aspects of their past and present lives either for personal use or to improve care. A more in-depth feasibility study of life story work in six care homes and four inpatient mental health assessment wards was carried out to gain a better understanding of the practice and potential costs and effects of life story work in these settings and to assess the feasibility of full-scale evaluation (Gridley, Brooks, Birks, Baxter, & Parker, 2016).

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Results

Discussion

Conclusion