Exploring the impact of an indirect music therapy intervention on the quality of life of informal caregivers of people living with dementia in the community

People living with dementia often reside in the community supported by a family member. Providing care for a loved one can be challenging, and the COVID-19 pandemic has exacerbated demands on caregivers in the community. Psychosocial interventions offering training and support effectively address wellbeing outcomes for caregivers. However, there is limited research investigating caregiver support through training with a music therapist, also called ‘indirect music therapy’. This PhD is nested in the HOMESIDE international randomised controlled trial (Baker et al., 2019a), which presents an opportunity to study an innovative indirect music therapy model.This mixed methods study explores the impact of the HOMESIDE indirect music therapy intervention on caregiver quality of life. It uses a multi-strand design supported by a two-part systematic literature review developing and testing a framework for caregiver quality of life support. The project then integrates perspectives of intervention impact using 1) a sequential explanatory design to explore perspectives of eight music therapists delivering the HOMESIDE intervention across five countries, 2) a convergent design merging qualitative and quantitative outcome data from 15 HOMESIDE dyads in the UK and 3) a case series of three HOMESIDE dyads exploring intervention processes and mechanisms from a researcher-practitioner perspective.Integration of mixed methods findings from all study strands indicates that several aspects of caregiver quality of life, including mental health, the caregiving relationship, knowledge of dementia and access to support may be maintained by the music intervention. Mechanisms supporting these positive changes occur in four re-iterative phases, including 1) exploring responses to music, 2) navigating challenges, 3) meaningful music experiences and 4) embedding music into daily life. This study demonstrates the potential for indirect music therapy to support quality of life for caregivers of people with dementia. It outlines implications for future practice including the need for an overt focus on the caregiver, long-term therapist input and a social support model.</p

Experiences of participant and public involvement in an international randomized controlled trial for people living with dementia and their informal caregivers

BackgroundThis study was initiated and co-designed by a Participant and Public Involvement (PPI) group attached to HOMESIDE, a randomized controlled trial that investigated music and reading interventions for people living with dementia and their family caregivers across five countries: Australia, Germany, Norway, Poland, and the UK. The aim was to capture experiences of PPI across the five countries, explore the benefits and challenges of PPI in dementia research, and identify contributions made to the study.MethodsWe surveyed PPI members and academic researchers who collaborated on the HOMESIDE study. The survey was co-designed through consultation with PPI members and academics, alongside a small scoping literature review. Survey questions covered four topics: (1) expectations for PPI, (2) perceived contributions of PPI to the research study, (3) benefits and challenges of PPI, and (4) recommendations for future PPI in dementia research.ResultsThere were 23 responses, representing 50% of the PPI members (n = 16) and 29% of academics (n = 7). PPI was found to be beneficial to the research and individuals involved. Contributions to the research included supporting recruitment and publicity, advising on the design of participant-facing materials, guiding the design and delivery of the interventions, and identifying cultural differences affecting research delivery. PPI members benefited from building connections, sharing experiences and receiving support, learning about dementia and research, and gaining new unexpected experiences. Academics learned about the realities of living with dementia, which they felt informed and grounded their work. Several challenges were identified, including the need for clear expectations and objectives, inconsistency of PPI members across research stages, limitations of meeting online versus in-person, scheduling difficulties, and language barriers.ConclusionsThis study identifies important considerations for implementing PPI within dementia studies and international healthcare research more broadly. Our findings guided the development of five recommendations: (1) involve PPI members as early as possible and throughout the research process; (2) create a space for constructive criticism and feedback; (3) have clear tasks, roles, and expectations for PPI members; (4) involve PPI members with a diverse range of experiences and backgrounds; and (5) embed infrastructure and planning to support PPI.</p