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Project Topic
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Our project aims to address the need for improved informal care by training cohabitating spouse caregivers (CGs) to implement music interventions (MI) that target behavioural and psychological symptoms of dementia (BPSD), and the quality of life (QoL) and wellbeing of people with dementia (PwD), and of CGs. Our large international three-arm parallelgroup randomized controlled trial (RCT) involving 495 dyads from Australia, Germany, UK, Poland and Norway, will test the effectiveness of a 3-month home-based music program on the BPSD of PwD (primary outcome). Secondary outcomes will examine relationship quality between CG and PwD, depression, resilience, competence, QoL for the CG, and QoL in PwD. Our RCT will compare the MI delivered by trained CGs + standard care (SC), with SC alone (primary comparison), and with another active intervention (reading + SC). As the majority of PwD live in the community and not in residential care settings, quality informal care for PwD is crucial for managing BPSD and enhancing QoL. Past studies prove that music therapy can reduce BPSD, and other studies explore how formal carers use music in their caring roles. However, no large fully powered study has examined the effects of MI delivered by spouse caregivers (CGs) in the home-setting. HOMESIDE addresses this knowledge gap. Our consortium recognizes the challenges CGs experience as they undertake the essential care of PwD while simultaneously striving to sustain a meaningful and mutually satisfying relationship. As BPSD become increasingly difficult to manage with disease progression, CGs can become overwhelmed cognitively, emotionally and physically. This may have a negative flow-on effect to PwD, CGs and society (e.g. higher rates of illness, greater rates of access to medical and social services). There is thus a need for CGs to learn about and implement engaging and effective ways to manage BPSD and support wellbeing for the PwD. Currently available carer groups and carer-training programs have potential benefit but uptake is low due to the increased burden of attending programs outside of the home context. MI have long been used by music therapists to manage BPSD, support relationships, and manage stress. We expect that with support and training the MI will be easily implemented in the family home by CGs. Our health economic analysis will calculate the cost effectiveness of the MI and compare this with SC and a reading intervention to determine whether the MI are clinically effective and cost-effective and should be made widely accessible for CGs. Carer and Consumer involvement (herein Public and Patient Involvement, PPI) across all stages of the project is integral to ensure that investigators tailor the MI to meet the diverse individual and cultural needs of PwD and CGs. To ensure international applicability and maximum reach, we will develop written training manuals and training videos in English, German, Norwegian, and Polish, and we will make them available free of charge via YouTube and purpose-built websites.
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