Decision-making for receiving paid home care for dementia in the time of COVID-19: a qualitative study
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RESEARCH ARTICLE
Open Access
Decision-making for receiving paid home care for dementia in the time of COVID-19: a qualitative study Clarissa Giebel1,2,3* , Kerry Hanna1, Jacqueline Cannon4, Ruth Eley5, Hilary Tetlow6, Anna Gaughan7, Aravind Komuravelli8, Justine Shenton9, Carol Rogers10, Sarah Butchard1,11, Steve Callaghan12, Stan Limbert2, Manoj Rajagopal13, Kym Ward14, Lisa Shaw15, Rosie Whittington16, Mishca Hughes1 and Mark Gabbay1,2
Abstract Background: 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. Methods: Unpaid 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 decisionmaking processes of accessing paid home care since the outbreak and public health restrictions. Results: Fifteen 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. Conclusions: This 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. Keywords: Formal care, Dementia, COVID-19, Corona virus, Carers
Background Dementia affects approximately 50 million people worldwide [1], and is characterised by difficulties with cognition, behaviour, motor performance, and everyday functioning, amongst others, all of which can vary by the dementia subtype [2, 3]. Depending on the symptom * Correspondence: [email protected] 1 Department of Primary Care and Mental Health, University of Liverpool, Liverpool, UK 2 NIHR ARC NWC, Liverpool, UK Full list of author information is available at the end of the article
severity, unpaid carers (family members or friends) can also be affected by the dementia, by providing increased levels of unpaid care [4]. This in turn can cause higher levels of carer burden, therefore the needs of unpaid carers are of equal importance and should be supported in the dementia-caring process. Generally, people living with dementia (PLWD) want to remain independent and living in their own home for as long as possible, without wanting to rely
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