HOMESIDE. A HOME-based Spousal caregiver-delivered music Intervention for people living with DEmentia: A Randomised Controlled Trial

HOMESIDE is an acronym for Home-based caregiver-delivered music and reading interventions for people living with dementia. Homeside is a study about music, reading and dementia. The study is a large international research project involving five countries and almost 1,000 participants. The five countries are Australia (which has the international leader in the project), Germany, Poland, Great Britain and Norway. The EU's joint program for neurodegenerative diseases (JPND) awarded the study. The Research Council of Norway funds the Norwegian partner, the Norwegian Academy of Music (NMH), represented by the Center for Research in Music and Health (CREMAH). The centre's head, Professor Karette Stensæth, leads the Norwegian team. HOMESIDE targets people with dementia who live at home with a partner/spouse or another person who is perceived as close and provides care (hereafter referred to as partner). The project, which is clinically quantitative, is a so-called three-arm randomized controlled trial (RCT): A group receives a music program, and this group is compared with a group that receives a reading program and a group that receives standard care (and thus no other program). The partner completes the programs after he/she has received training from qualified music therapists (in the music programs) and occupational therapists (in the reading programs). The therapists have extensive experience of working with dementia. The primary aim of HOMESIDE is to test the effect of the three-month home-based music and reading programs on behavioral and psychological symptoms of dementia. To measure this, the measuring instrument NPI-Q (Neuropsychiatric Inventory Questionnaire) is used. Furthermore, standardized questionnaires are used to measure any changes in other areas (secondary measures). In addition, measurements are done of the quality of the relationship between the person with dementia and the partner, on depression, resilience and quality of life in the partner as well as quality of life in the person with dementia. The results will also be assessed with regard to cost-effectiveness. Data collection has now ended, and between 27 November 2019 and 7 July 2022, the study randomized 432 participant pairs (out of 805 who expressed interest). Analyzes are still ongoing, and many publications are expected in the future. The most important one, which will answer the study's main question, is expected to be published in June 2023 at the earliest. Homeside Norway started 1 August 2019. Funding from the Norwegian National Research Council ended 30 April 2023. Due to Covid 19, Homeside had to switch to online implementation. The recruitment has been demanding, partly due to Covid, but with some extension of time and with good cooperation between the partners, we have managed to carry out a large study in a very demanding time while also managing to achieve our goals. The Norwegian team has developed the international website (www.homesidestudy.eu). All activities, results and media coverage are presented there. Here you can also download and read the study's publications. You can also read about sub-projects and PhD projects linked to the study there. Activities and results for Homeside Norge in particular are presented on a separate page. Homeside Norway also has an active Facebook page. Since dementia is one of the major public health challenges of our time, there will be a need for many drug-free models in the future that can be both health-promoting and health-preventive for people living at home with dementia. Homeside is an ideal project, which tests out a well-grounded model in which indirect music therapy is used, i.e. qualified music therapists who train carers in providing musical care for their loved ones. The results of this study will guide us in developing such indirect models further. The Homeside consortium has continuous meetings to develop new projects that explore and optimise such models further in order to meet the needs of future home-dwelling people with dementia and their relatives.

The number of people living with dementia (PwD) worldwide is expected to double every 20 years. Many continue living at home, receiving support from family caregivers who may experience significant stress, simultaneously to that of the PwD. Family caregivers (CG) of PwD provide vital physical and psycho-emotional care to manage behavioural and psychological symptoms of dementia (BPSD) in the home setting, and in doing so, contribute economically to society. Also, indirect non-pharmacological/psychosocial interventions that equip caregivers with specific knowledge and skills to facilitate reciprocity, meaningful interaction, and engagement are recommended. While music therapy reduces BPSD, we lack evidence on effective, scalable and feasible home-based interventions. The Homeside study aimed to determine the effectiveness of CG- delivered music interventions (MI) on BPSD. We implemented a community-based, large, pragmatic, international, superiority, single-blind randomised controlled trial to evaluate if CG- delivered MI plus standard care (MI+SC) and a comparative reading intervention (RI+SC) was superior to standard care (SC) on reducing BPSD of PwD measured by the Neuropsychiatric Inventory-Questionnaire (NPI-Q). Co-habiting dyads residing in five countries (Australia, United Kingdom, Germany, Poland and Norway,) where one had a dementia diagnosis with NPI-Q and scored >6 on the NPI-Q were eligible. The protocolized MI+SC and RI+SC training sessions were delivered by therapists, trained CGs engaged PwD in 5x30min reading or music activities care per week; methods to assist with dementia care. Guidance was provided on targeted use of music to regulate arousal, and for effective evocation of autobiographical memories. The RI was implemented using the same model. The study randomised 432 participant pairs (out of 805 who expressed interest). Analyzes are still ongoing. The main paper, which will answer the study's main question, is expected to be published in June 2023 at the earliest. Since dementia is one of the major public health challenges of our time, there is a need for many drug-free models in the future that can have a long term impact on health-promoting and health-preventive for people living with dementia at home. Homeside is an ideal project, which tests out a well-grounded model in which indirect music therapy is used, i.e. qualified music therapists who train carers in providing musical care for their loved ones. The results of this study will guide us in developing such indirect models further and teach us how to optimise homebased interventions in order to meet the needs of future home-dwelling people with dementia and their relatives, worldwide. Homeside informes and recognizes a wide use of music in dementia and has also increased interdisciplinary and international research collaboration and the application of research results by different user stakeholders in this field.

Our project aims to address the need for improved informal care by training cohabiting spouse caregivers (CGs) to implement music interventions (MI) that target behavioral and psychological symptoms of dementia (BPSD), and the quality of life (QoL) and well-being of people with dementia (PwD), and of CGs. Our study involves a large international three-arm parallel group randomized controlled trial involving 495 dyads from Australia, Germany, UK, Poland and Norway. 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 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 well-being for the PwD. 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. 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.