eprintid: 1477244 rev_number: 23 eprint_status: archive userid: 608 dir: disk0/01/47/72/44 datestamp: 2016-03-31 15:42:55 lastmod: 2021-10-17 23:49:46 status_changed: 2016-03-31 15:42:55 type: article metadata_visibility: show creators_name: Lord, K creators_name: Livingston, G creators_name: Robertson, S creators_name: Cooper, C title: How people with dementia and their families decide about moving to a care home and support their needs: development of a decision aid, a qualitative study ispublished: pub divisions: UCL divisions: B02 divisions: C07 divisions: D79 keywords: Care home, Carers, Decision-making, Dementia, Place of care note: This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. abstract: BACKGROUND: People with dementia and their relatives find decisions about the person with dementia living in a care home difficult. METHODS: We interviewed 20 people with dementia or family carers around the time of this decision in order to design a decision-aid. RESULTS: Decision-makers balanced the competing priorities of remaining somewhere familiar, family's wish they remain at home, reduction of risk and effects on carer's and person with dementia's physical health. The person with dementia frequently resented their lack of autonomy as decisions about care home moves were made after insight and judgment were impaired. Family consultation usually helped carers but sometimes exacerbated tensions. Direct professional support was appreciated where it was available. There is a need for healthcare professionals to facilitate these conversations around decision-making and to include more than signposting to other organisations. CONCLUSIONS: There is a need for a healthcare professional facilitated decision-aid. This should detail what might change for the person with dementia and their carer, possible resources and alternatives and assist in facilitating discussion with the wider family; further research will develop and test a tool to facilitate decision making about place of care needs. date: 2016-03-21 date_type: published official_url: http://dx.doi.org/10.1186/s12877-016-0242-1 oa_status: green full_text_type: pub language: eng primo: open primo_central: open_green article_type_text: Journal Article verified: verified_manual elements_id: 1120390 doi: 10.1186/s12877-016-0242-1 pii: 10.1186/s12877-016-0242-1 language_elements: eng lyricists_name: Cooper, Claudia lyricists_name: Livingston, Gillian lyricists_name: Lord, Kathryn lyricists_name: Robertson, Sarah lyricists_id: CCOOP74 lyricists_id: GALIV58 lyricists_id: KDLOR60 lyricists_id: SROBE08 actors_name: Lord, Kathryn actors_id: KDLOR60 actors_role: owner full_text_status: public publication: BMC Geriatrics volume: 16 number: 1 pagerange: 68 event_location: England issn: 1471-2318 citation: Lord, K; Livingston, G; Robertson, S; Cooper, C; (2016) How people with dementia and their families decide about moving to a care home and support their needs: development of a decision aid, a qualitative study. BMC Geriatrics , 16 (1) p. 68. 10.1186/s12877-016-0242-1 <https://doi.org/10.1186/s12877-016-0242-1>. Green open access document_url: https://discovery.ucl.ac.uk/id/eprint/1477244/1/art%253A10.1186%252Fs12877-016-0242-1.pdf