eprintid: 10125142
rev_number: 46
eprint_status: archive
userid: 608
dir: disk0/10/12/51/42
datestamp: 2021-03-30 13:46:11
lastmod: 2023-02-06 10:58:15
status_changed: 2021-09-02 15:07:17
type: article
metadata_visibility: show
creators_name: Barrado-Martin, Y
creators_name: Nair, P
creators_name: Anantapong, K
creators_name: Aker, N
creators_name: Smith, C
creators_name: Rait, G
creators_name: Sampson, E
creators_name: Manthorpe, J
creators_name: Davies, N
title: Family caregivers’ and professionals’ experiences of supporting people living with dementia’s nutrition and hydration needs towards the end-of-life
ispublished: pub
divisions: UCL
divisions: B02
divisions: C07
divisions: D05
divisions: F71
divisions: D79
divisions: D12
divisions: G20
note: © 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.
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.
date: 2022-01
date_type: published
publisher: Blackwell Publishing
official_url: https://doi.org/10.1111/hsc.13404
oa_status: green
full_text_type: pub
language: eng
primo: open
primo_central: open_green
verified: verified_manual
elements_id: 1855656
doi: 10.1111/hsc.13404
lyricists_name: Aker, Narin
lyricists_name: Anantapong, Kanthee
lyricists_name: Barrado-Martin, Yolanda
lyricists_name: Davies, Nathan
lyricists_name: Moore, Kirsten
lyricists_name: Nair, Pushpa
lyricists_name: Rait, Greta
lyricists_name: Sampson, Elizabeth
lyricists_name: Smith, Christina
lyricists_id: AKERX86
lyricists_id: KANAN29
lyricists_id: YBARR68
lyricists_id: NMDAV86
lyricists_id: KJMOO67
lyricists_id: PNAIR85
lyricists_id: GRAIT16
lyricists_id: ELSAM39
lyricists_id: CHSMI43
actors_name: Davies, Nathan
actors_id: NMDAV86
actors_role: owner
full_text_status: public
publication: Health and Social Care in the Community
volume: 30
number: 1
pagerange: 307-318
citation:        Barrado-Martin, Y;    Nair, P;    Anantapong, K;    Aker, N;    Smith, C;    Rait, G;    Sampson, E;         ... Davies, N; + view all <#>        Barrado-Martin, Y;  Nair, P;  Anantapong, K;  Aker, N;  Smith, C;  Rait, G;  Sampson, E;  Manthorpe, J;  Davies, N;   - view fewer <#>    (2022)    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 , 30  (1)   pp. 307-318.    10.1111/hsc.13404 <https://doi.org/10.1111/hsc.13404>.       Green open access   
 
document_url: https://discovery.ucl.ac.uk/id/eprint/10125142/7/Aker_Health%20Social%20Care%20Comm%20-%202021%20-%20Barrado%E2%80%90Mart%20n%20-%20Family%20caregivers%20%20and%20professionals%20%20experiences%20of%20supporting%20people.pdf