Home care in dementia: The views of informal carers from a co-designed consultation

From SAGE Publishing via Jisc Publications RouterHistory: epub 2021-02-03Publication status: PublishedFunder: The National Institute for Health Research (NIHR), School for Social Care Research; Grant(s): 1162242Background: In the United Kingdom, there is a current priority for high-quality dementia care provided at home. However, home care or domiciliary care is an area where problems have been reported, in terms of a lack of consistency, coordination and appropriate responses to the specific needs of those with dementia. The views of informal carers, who often must respond to these problems when supporting relatives, are crucial in shedding light on the issues and in seeking to promote solutions. Methods: This study explored the views of informal carers of those with dementia concerning home care, through a consultation using an electronic survey. The survey questions were designed by informal carers, through a public involvement group within an existing programme of dementia research. The survey elicited responses from 52 informal carers in 2017/18. The data were analysed qualitatively using framework analysis. Findings: Carers’ views focused on the need for investment into meaningful personalisation, recognising the value of providing care and valuing formal carers, systemic failings of care coordination and provision and the importance of ongoing collaboration and care planning. Conclusion: Based on a framework drawn from the views of informal carers themselves, this study articulated issues of concern for home care and its delivery for people with dementia. Attempts should be made to make dementia home care more consistently personalised, inclusive and collaborative with informal carers and key others involved. Further areas to explore include working conditions of formal carers and current models utilised in homecare provision

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Data from the Evi-Dem Study: Effective Home Support in Dementia Care

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Judgements about carer assessments for carers of people with dementia: case vignette study

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Data and anonymised case vignettes from the study: Judgements about carer assessments for carers of people with dementia

UK carer assessments, in primary and social care, intend to discover what carers require in their caring roles and more widely. Evidence points to these not being configured sufficiently around carers of people with dementia, with potentially their breadth of needs not being recognised. We evaluated the extent of agreement, between carers of people with dementia, primary care, and social care professionals, on their recommendations from assessing carers’ needs in a range of circumstances. The findings from this are to be taken forward as recommendations for policy and practice. Here we present the anonymised case vignettes, designed by carers, for use in this study to rate carers, health service and social care professionals' judgements about the needs of carers. Also presented are the datasets to perform analyses of these judgements, using Fleiss’ kappa coefficients to measure the level of agreement amongst multiple carers, primary and social care staff and overall