Abstract
BackgroundThe lockdown imposed in the UK on the 23rd of March and associated public health measures of social distancing are likely to have had a great impact on care provision. The aim of this study was to explore the decision-making processes of continued paid home care support for dementia in the time of COVID-19.MethodsUnpaid carers caring for a person living with dementia (PLWD) who were accessing paid home care before COVID-19 and residing in the UK were eligible to take part. Participants were interviewed over the phone and asked about their experiences of using paid home care services before and since COVID-19, and their decision-making processes of accessing paid home care since the outbreak and public health restrictions.ResultsFifteen unpaid carers, who were also accessing paid care support for the PLWD before COVID-19, were included in the analysis. Thematic analysis identified three overarching themes: (1) Risk; (2) Making difficult choices and risk management; and (3) Implications for unpaid carers. Many unpaid carers decided to discontinue paid carers entering the home due to the risk of infection, resulting in unpaid carers having to pick up the care hours to support the person living with dementia.ConclusionsThis is the first study to report on the impact of COVID-19 on paid home care changes in dementia. Findings raise implications for providing better Personal Protective Equipment for paid carers, and to support unpaid carers better in their roles, with the pandemic likely to stay in place for the foreseeable future.
Highlights
The lockdown imposed in the UK on the 23rd of March and associated public health measures of social distancing are likely to have had a great impact on care provision
Carers lived in a mix of disadvantaged and more affluent neighbourhoods, based on their IMD Quintile, with people living with dementia (PLWD) tending to live in more disadvantaged neighbourhoods
This caused a great deal of worry to unpaid carers, as they had no knowledge of whether individual paid home care workers adhered to public health restrictions or met up with members of different households after work
Summary
The lockdown imposed in the UK on the 23rd of March and associated public health measures of social distancing are likely to have had a great impact on care provision. The aim of this study was to explore the decision-making processes of continued paid home care support for dementia in the time of COVID-19. People living with dementia (PLWD) want to remain independent and living in their own home for as long as possible, without wanting to rely on others [5]. To enable living in the community for as long as possible, paid carers become a vital aspect of care for Giebel et al BMC Geriatrics (2020) 20:333 many PLWD as the condition advances. Needing support with personal care is usually more pronounced as the dementia progresses [6], and home care services are often employed when the PLWD becomes more dependent with daily activities [7] and/or the unpaid carer, a family member or friend, is unable to provide sufficient support [8]. Across Europe, receiving formal care is often perceived as a threat to PLWD’s independence and only accessed if required [9]
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