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

<jats:sec><jats:title>Introduction</jats:title><jats:p> 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. </jats:p></jats:sec><jats:sec><jats:title>Methods</jats:title><jats:p> 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. </jats:p></jats:sec><jats:sec><jats:title>Results</jats:title><jats:p> 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. </jats:p></jats:sec><jats:sec><jats:title>Conclusion</jats:title><jats:p> 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. </jats:p></jats:sec>

A participatory arts programme – Shared experience for family caregivers and care recipients

“…Based on our results, a combination of various arts was experienced as the most effective. Previously, art gallery viewing and group singing (Osman et al, 2016;Skingley et al, 2020) showed promising results. However, our results do not fully confirm that activities that allow active learning give hope and relief to daily life and increased self-confidence to do something constructive, as reported in previous studies (Bourne et al, 2021;Van't Leven et al, 2018).…”

“…According to Ward et al ( 2020 ), participatory art aims to promote health and well‐being without focusing on the health condition. Moreover, participating in art groups positively influences the relationships between carer and cared‐for (Skingley et al, 2020 ).…”

“…In addition, the experiences of family caregivers in art interventions have been studied. Those studies focused on arts activities, such as singing together (Camic et al, 2011 ; Osman et al, 2016 ; Skingley et al, 2020 ; Unadkat et al, 2017 ). More knowledge and understanding are needed about participatory art interventions that employ various art genres to improve art interventions for promoting caregivers' well‐being and living at home.…”

“…In addition, the experiences of family caregivers in art interventions have been studied. Those studies focused on arts activities, such as singing together (Camic et al, 2011;Osman et al, 2016;Skingley et al, 2020;Unadkat et al, 2017…”

Understanding the impact of an intergenerational arts and health project: a study into the psychological well-being of participants, carers and artists

“…Whilst there is evidence suggesting shared arts experiences yield benefits for both carers and the cared-for 5,[28][29][30] , previous research on the impact of intergenerational arts practice has tended to focus on the 'end users' of projects. However, it is important to examine those in supporting roles (i.e.…”