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      Decision-making for receiving paid home care for dementia in the time of COVID-19: a qualitative study

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          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 decision-making 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.

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          Most cited references13

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          Individual risk management strategy and potential therapeutic options for the COVID-19 pandemic

          It is an ugly fact that a significant amount of the world's population will contract SARS-CoV infection with the current spreading. While specific treatment is not yet coming soon, individual risk assessment and management strategies are crucial. The individual preventive and protective measures drive the personal risk of getting the disease. Among the virus-contracted hosts, their different metabolic status, as determined by their diet, nutrition, age, sex, medical conditions, lifestyle, and environmental factors, govern the personal fate toward different clinical severity of COVID-19, from asymptomatic, mild, moderate, to death. The careful individual assessment for the possible dietary, nutritional, medical, lifestyle, and environmental risks, together with the proper relevant risk management strategies, is the sensible way to deal with the pandemic of SARS-CoV-II.
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            Using thematic analysis in psychology

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              Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries

              Background People with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals. Method Focus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports. Results Overall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives. Conclusion Further investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families. Electronic supplementary material The online version of this article (10.1186/s12877-018-0816-1) contains supplementary material, which is available to authorized users.
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                Author and article information

                Contributors
                Clarissa.giebel@liverpool.ac.uk
                Journal
                BMC Geriatr
                BMC Geriatr
                BMC Geriatrics
                BioMed Central (London )
                1471-2318
                9 September 2020
                9 September 2020
                2020
                : 20
                : 333
                Affiliations
                [1 ]GRID grid.10025.36, ISNI 0000 0004 1936 8470, Department of Primary Care and Mental Health, , University of Liverpool, ; Liverpool, UK
                [2 ]NIHR ARC NWC, Liverpool, UK
                [3 ]GRID grid.10025.36, ISNI 0000 0004 1936 8470, Waterhouse Building B Block, , University of Liverpool, ; Brownlow Street, Liverpool, L69 3GL UK
                [4 ]GRID grid.495743.8, Lewy Body Society, ; Wigan, UK
                [5 ]Liverpool Dementia Action Alliance, Liverpool, UK
                [6 ]SURF Liverpool, Liverpool, UK
                [7 ]Together in Dementia Everyday, Liverpool, UK
                [8 ]North West Boroughs NHS Trust, Warrington, UK
                [9 ]Sefton Older People’s Forum, Sefton, UK
                [10 ]GRID grid.422298.7, ISNI 0000 0000 9126 4861, National Museums Liverpool, ; Liverpool, UK
                [11 ]GRID grid.436319.a, ISNI 0000 0004 0420 9813, Mersey Care NHS Trust, ; Liverpool, UK
                [12 ]EQE Health, Liverpool, UK
                [13 ]Lancashire and South Cumbria NHS Trust, Preston, UK
                [14 ]The Brain Charity, Liverpool, UK
                [15 ]Department of, Liverpool, UK
                [16 ]Me2U Day Care Centre, Liverpool, UK
                Author information
                http://orcid.org/0000-0002-0746-0566
                Article
                1719
                10.1186/s12877-020-01719-0
                7478902
                32900360
                5ae29522-976b-4f9b-9ec3-64313f34dff0
                © The Author(s) 2020

                Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

                History
                : 29 June 2020
                : 19 August 2020
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100000272, National Institute for Health Research;
                Award ID: NIHR ARC NWC
                Award Recipient :
                Funded by: University of Liverpool
                Award ID: COVID-19 Strategic Research Fund
                Award Recipient :
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2020

                Geriatric medicine
                formal care,dementia,covid-19,corona virus,carers
                Geriatric medicine
                formal care, dementia, covid-19, corona virus, carers

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