Post-pandemic attitudes towards participation in research on singing: results of an online survey of people with dementia and their carers

Aim: Our aim was to survey people with dementia and their carers with respect to their propensity to join a randomized trial of community singing in dementia, in the context of uncertainty following the COVID-19 pandemic.

Method: We employed an online anonymous questionnaire, comparing activities before and after lockdown, worries about COVID-19, whether people would attend a singing group and what measures might make this more likely. With a target sample of 100, the survey was distributed to the general population of people with dementia and carers in the UK between June and August 2022.

Results: We had a total of 168 respondents, of whom 30% were people living with dementia and 70% were carers. Those who were not worried (roughly 62%) were more likely to go out to groups. Worries about COVID-19 affected 38% of respondents but some judged the risk of going out to be worthwhile. Most felt able to take adequate precautions against infection. However, COVID-19 transmission was not the main impediment to attending a singing group and 19% of respondents were simply not interested in doing so, while mobility and shyness deterred others.

Conclusions: Given recruitment problems, quantitative studies of singing in dementia need to take account of individual preferences as well as contextual barriers, including fear of virus transmission, individual perceptions of the intervention and logistical obstacles to participation.