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Exploring the provision and support of care for long-term conditions in dementia: A qualitative study combining interviews and document analysis

Rees, Jess; Burton, Alexandra; Walters, Kate; Cooper, Claudia; (2023) Exploring the provision and support of care for long-term conditions in dementia: A qualitative study combining interviews and document analysis. Dementia: the international journal of social research and practice 10.1177/14713012231161854. (In press). Green open access

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Abstract

Background: The challenge of managing multiple long-term conditions is a prevalent issue for people with dementia and those who support their care. The presence of dementia complicates healthcare delivery and the development of personalised care plans, as health systems and clinical guidelines are often designed around single condition services. Objective: This study aimed to explore how care for long-term conditions is provided and supported for people with dementia in the community. Methods: In a qualitative, case study design, consecutive telephone or video-call interviews were conducted with people with dementia, their family carers and healthcare providers over a four-month period. Participant accounts were triangulated with documentary analysis of primary care medical records and event-based diaries kept by participants with dementia. Thematic analysis was used to develop across-group themes. Findings: Six main themes were identified from eight case studies: 1) Balancing support and independence, 2) Implementing and adapting advice for dementia contexts, 3) Prioritising physical, cognitive and mental health needs, 4) Competing and entwined needs and priorities, 5) Curating supportive professional networks, 6) Family carer support and coping. Discussion: These findings reflect the dynamic nature of dementia care which requires the adaptation of support in response to changing need. We witnessed the daily realities for families of implementing care recommendations in the community, which were often adapted for the contexts of family carers’ priorities for care of the person living with dementia and what they were able to provide. Realistic self-management plans which are deliverable in practice must consider the intersection of physical, cognitive and mental health needs and priorities, and family carers needs and resources.

Type: Article
Title: Exploring the provision and support of care for long-term conditions in dementia: A qualitative study combining interviews and document analysis
Open access status: An open access version is available from UCL Discovery
DOI: 10.1177/14713012231161854
Publisher version: https://doi.org/10.1177/14713012231161854
Language: English
Additional information: © The Author(s) 2023. Creative Commons License (CC BY 4.0) This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
Keywords: dementia, long-term conditions, chronic conditions, healthcare, management, qualitative, COVID-19
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health > Behavioural Science and Health
URI: https://discovery.ucl.ac.uk/id/eprint/10166186
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