Carers Create: Carer perspectives of a creative programme for people with dementia and their carers on the relationship within the (carer and cared-for) dyad

Abstract

Introduction: Relationships between people with dementia and their carers can prove challenging over the trajectory of the disease. Interventions with a potential to address this include arts and music-based activities. This research project aimed to evaluate a community engagement programme (Carers Create) where both people with dementia and their carers participate together in singing and other activities. A specific focus was on the impact of the sessions on the dyadic relationship. Methods: A grounded theory approach involved conducting three focus group interviews with carers of people with dementia (n = 16) facilitated by members of a local U3A (University of the Third Age) who were trained and supported by university researchers. Recorded conversations were transcribed and analysed using a three-stage coding and thematic development technique. Results: Four overarching themes were identified from the discourse: remembering the positive qualities of the cared-for, the physical and emotional demands of caring, Carers Create as a shared, beneficial activity and the enduring value of Carers Create. Conclusion: Carers found the sessions to positively influence the relationship with the person they cared for through offering some relief from the day-to-day pressures of caring and, in some cases, restoring elements of a previously strong relationship. Crucial to the experience was the fact that the sessions included both carer and cared-for, offering activities to do together, and that they took place within a group, thereby offering a degree of mutual support. In addition, some carers were able to build on learning which had taken place and use certain techniques, such as singing, to help manage care, thus extending the improved relationship.