The Importance of the Social Environment for People Living With Dementia and Their Carers:Qualitative Evidence From DETERMIND and PriDem on the Impact of COVID-19 Service Changes and Restrictions in England and Wales

This paper presents evidence from multiple perspectives on the impact of changes to health and social care service delivery, and the related social environment, for people living with dementia and their carers during the COVID-19 pandemic. Qualitative interview data from 130 people living with dementia, family carers and health and social care professionals in England and Wales were collected for the DETERMIND and PriDem studies during the height of the COVID-19 pandemic (2020–2021). These were analysed abductively by members of both teams, applying the lens of person-centred dementia theory. The lack of in-person social and professional contact was of great concern during the pandemic to people living with dementia, family carers and health and social care professionals. Our overarching finding that service changes degraded the social environment of the person living with dementia had five sub-themes: (1) A state of limbo; (2) Social environment overlooked as a priority; (3) Effects on family carers; (4) Tensions between a medical versus person-centred approach; (5) Maintaining or regaining a focus on personhood. Crosscutting these was a risk that people who were already disadvantaged by isolation and impairment were most affected by service changes. Pressures on carers to facilitate and/or directly provide social stimulation in the absence of previous opportunities might explain the concurrent deterioration of carers’ quality of life. Professionals worked hard to find ways to tailor support and facilitate social contact within the limits of pandemic restrictions, demonstrating that this is possible and should be prioritised. A further suggestion was to delineate dementia social groups as ‘necessary care’ in future, given their importance to the wellbeing of people living with dementia and their carers. We conclude that person-centred delivery can be achieved in even the most challenging of circumstances and should be a core consideration of future planning for crises, prioritising social wellbeing alongside medical need.