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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

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. Green open access

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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.

Type: Article
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
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1186/s12877-016-0242-1
Publisher version: http://dx.doi.org/10.1186/s12877-016-0242-1
Language: English
Additional information: 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.
Keywords: Care home, Carers, Decision-making, Dementia, Place of care
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 > Division of Psychiatry
URI: https://discovery.ucl.ac.uk/id/eprint/1477244
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