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Family caregivers’ and professionals’ experiences of supporting people living with dementia’s nutrition and hydration needs towards the end-of-life

Barrado-Martin, Y; Nair, P; Anantapong, K; Aker, N; Smith, C; Rait, G; Sampson, E; ... Davies, N; + view all (2021) Family caregivers’ and professionals’ experiences of supporting people living with dementia’s nutrition and hydration needs towards the end-of-life. Health and Social Care in the Community 10.1111/hsc.13404. (In press). Green open access

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Abstract

The aim of this paper was to understand the needs of family caregivers and professionals supporting people living with dementia with eating and drinking difficulties towards the end of life and the strategies they use to overcome them. A total of 41 semi-structured interviews with family caregivers (n = 21) and professionals (n = 20) were conducted in London and surrounding areas of England. Interviews were audio-recorded and transcribed verbatim. Four themes were identified: caregivers accessing and seeking help, perceived priorities of care, professionals' supportiveness and educational role, and strategies. Caregivers often struggle as they are not aware of the eating and drinking difficulties associated with dementia's progression. Care can change over time with families prioritising a person's comfort towards the end of life rather than ensuring a particular level of nutrition. Mutual support is required by both professionals and caregivers to enhance the care of the person living with dementia. Cognitive difficulties are often behind initial eating and drinking challenges in dementia, whereas physical challenges take over towards the later stages. Flexibility and creativity are key to adapting to changing needs. There is a need to raise awareness of the eating and drinking challenges associated with the progression of dementia. Professionals can help caregivers embark on the transition towards focussing on comfort and enjoyment of eating and drinking near the end of life rather than nutrition. This is particularly relevant for those caring for a relative living at home. Caregivers' input is needed to tailor professionals' recommendations.

Type: Article
Title: Family caregivers’ and professionals’ experiences of supporting people living with dementia’s nutrition and hydration needs towards the end-of-life
Open access status: An open access version is available from UCL Discovery
DOI: 10.1111/hsc.13404
Publisher version: https://doi.org/10.1111/hsc.13404
Language: English
Additional information: © 2021 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
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 Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Language and Cognition
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
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 > Primary Care and Population Health
URI: https://discovery.ucl.ac.uk/id/eprint/10125142
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