Title: Preliminary Randomised Evaluation of Singing in Dementia 2024 (PRESIDE 2024)
Funder: Department of Health and Social Care

Abstract: Background As the number of people living with dementia grows, so does the need to provide them with adequate psychosocial support. Many people with dementia live at home with family carers, who also require social and emotional support to cope with their role. Community group singing has received attention for its potential to support people with dementia and their carers. It is postulated that singing can improve cognitive function, strengthen the bonds between care partners, and help to establish social support networks. Taken together, these benefits have the potential to reduce burden on social care services. However, there is a lack of rigorous evidence of singing s benefits for this population. This study aims to test the feasibility of a randomised controlled trial of community singing in dementia, to pave the way for a larger, conclusive study. Methods The PRESIDE 2024 study is designed as a two-arm, parallel group randomised trial with a waiting list control. Dyads consisting of a person with dementia (n=80) and their carer (n=80) will be recruited. Each dyad will be randomised either to attend 10 weeks of community group singing sessions straight away, or to wait for three months before attending the sessions. The singing sessions will be led by experienced professional musicians and will last about 90 minutes, including time for socialising. The primary outcome of this study is the attainment of feasibility criteria around recruitment, retention and the acceptability of the waiting list control. Secondary outcomes include the use of health and social care services, quality of life, social independence, loneliness, musical engagement, mood, and cognition of the person with dementia, and quality of life, mood, loneliness and experiences of the carer. These data will be collected during home visits at baseline, and three and six months post-baseline. Discussion Despite growing public interest in the positive effects of singing, and encouraging findings from qualitative and non-randomised quantitative studies, there is a lack of rigorous evidence. This is the first European randomised controlled trial of community group singing for people with dementia. If the results favour a full trial, conclusively demonstrating the effectiveness of group singing could positively affect the opportunities available to community-dwelling people with dementia and their carers, thus enabling them to feel less isolated and better supported, and consequently reducing the demand on social care services.

Lay abstract: Most people with dementia are likely to spend years with a relative or close friend as their principal carer. There is a shortage of effective social support to people in this situation, but singing is popular, accessible to most and relatively cheap to deliver at scale. The logic of its effect is that (i) the social, emotional and physical stimulation helps to maintain brain functioning; (ii) an enjoyable shared experience may strengthen the caring relationship; (iii) participation can give access to information, advice and peer support, particularly for the carers; and (iv) the need for long-term care may be delayed, with consequent savings to the state while enabling people with dementia to remain living at home. People who attend singing groups tell us that they enjoy the music and getting out. Meeting people in a similar situation is an added bonus, some say. Still, we do not know whether regular participation in singing sessions makes a measurable difference to people s experience of dementia or their ability to keep living in the community. Moreover, many people do not have access to singing groups due to lack of funding. We also lack research evidence to justify spending on this activity. We will involve people with dementia of any type if they are not regular singers, and provided they have a carer or supporter who can attend with them. For those who agree to join the study, the first interview will be followed by two more, 3 and 6 months later. Half the participating pairs, chosen at random, will attend weekly singing sessions of 90 minutes in groups of 10-15 couples for 10 weeks. We shall ask the remaining pairs not to take part in formal singing activities for 3 months. The reason for asking half the pairs to wait is that it allows us to compare the effects of singing between the group that sings first and the group that waits. Since the waiting group does get to attend sessions eventually, we hope this will help to prevent them becoming demoralised and dropping out of the study. Preliminary Evaluation of Singing in Dementia (PRESIDE) is a necessary step to a formal evaluation of the costs and benefits of community singing. It will gather information which can be used to plan a larger study. We want to show that we can recruit enough people, that they remain in the study for long enough to collect the follow up data, and that the research methods are acceptable to them. If we can meet these targets, then we will know that running a larger-scale version of this study is likely to be possible, and will seek further funding to carry this out.

Research activity codes: 6.6 PSYCHOLOGICAL AND BEHAVIOURAL
Health categories: NEUROLOGICAL