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