Living at home with dementia: the role of informal carers and experience of integrated care – a mixed methods study

Biswas, Priti (2021) Living at home with dementia: the role of informal carers and experience of integrated care – a mixed methods study. Doctoral thesis, University of East Anglia.

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Abstract

Dementia is a major cause of disability in old age. Since an effective cure has not yet been discovered, dementia care poses major challenges for health and social care services, families, and society as a whole. In 2015, the UK Government pledged to transform dementia care by improving and delivering integrated person-centred care and support at home in the community, for people with dementia and their informal carers. This research seeks to enhance understanding of dementia care at home and the role played by the informal carer in the community.

The study used an exploratory sequential mixed methods design. Following literature reviews, in an initial phase, in-depth interviews were conducted with participants based on purposive sampling. The results of this phase generated the important themes that were then used to design and carry out an online informal carers survey. In the final phase, focus group discussions with informal carers and dementia service providers provided an opportunity to triangulate the research findings and finalise results.

The study identifies essential care domains in dementia and demonstrates that an enhanced understanding of these domains can improve the quality of care for people living at home with dementia. Informal care is a complex phenomenon, often representing a lifetime investment in social capital, which the person with dementia can utilize to meet care needs. The study concludes that the informal carer is insufficiently accounted for in the current integrated care models. It suggests the need for a person-centred holistic assessment as well as appropriate care education and skill training for informal carers to improve carer readiness. A theoretical contribution is made by proposing a widened interpretation and application of resources in determining needs in care assessment and delivering care packages, in person-centred, integrated dementia care at home.

Item Type: Thesis (Doctoral)
Faculty \ School: Faculty of Medicine and Health Sciences > School of Health Sciences
Depositing User: Chris White
Date Deposited: 17 Nov 2021 11:55
Last Modified: 17 Nov 2021 11:55
URI: https://ueaeprints.uea.ac.uk/id/eprint/82150
DOI:

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