"We will tell everyone!" Capturing the impact of public and patient involvement in music therapy and dementia research through songwriting.

Abstract

This paper describes and presents findings from a doctoral research project where songwriting was used as an approach to capture the impact of Patient and Public Involvement (PPI) in research. This paper is situated in the context of a larger research project which explored how telehealth music therapy can support people with dementia and their family caregivers living in the community. The research was guided by three PPI contributors with dementia with support from their family care partners to ensure the relevance of research outputs for people with dementia living in the community. To capture their experiences of being involved in this research, they collaboratively wrote a song entitled 'We Will Tell Everyone', about living well with dementia and the impact of being involved in dementia research. This paper presents the process of writing the song, the lyrics of the original song, alongside the PPI contributors experiences. Qualitative research using Interpretative Phenomenological Analysis was undertaken to analyse the process. Three themes emerged: (a) An empowering experience, (b) the importance of collaboration, respect and listening, and (c) a message of hope. This paper demonstrates how arts-based research methods such as songwriting can make research findings more impactful and offers a creative and accessible approach to capture the voices and lived experiences of people with dementia in research.