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

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.