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The key aspects of online support that older family carers of people with dementia want at the end of life: A qualitative study

Davies, N; Iliffe, S; Hopwood, J; Walker, N; Ross, J; Rait, G; Walters, K; (2020) The key aspects of online support that older family carers of people with dementia want at the end of life: A qualitative study. Ageing and Mental Health , 24 (10) pp. 1654-1661. 10.1080/13607863.2019.1642299. Green open access

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Abstract

Aim: Family carers towards the end of life face a range of difficult challenges and have high levels of support needs. The aim of this study was to explore the challenges older (over 65 years) family carers of people with dementia face towards the end of life and their support needs which could be addressed by online support. / Methods: Qualitative study using semi-structured interviews with 23 current and former family carers of people with dementia in England in 2016-2017. Interviews were analysed using thematic analysis. / Results: Most family carers interviewed had positive views of receiving support online via a website. Participants described a series of challenges they felt online support could address and help support them with when caring for someone with dementia towards the end of life: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) balancing their own needs with those of the individual; and 4) maintaining control and being the co-ordinator of care. However many valued a mix of technology and face-to-face interaction in receiving support. / Conclusions: This study has identified the key challenges for older family carers at the end of life that could be met by online support. Online support offers a source of support to supplement face-to-face interaction, as many family carers still wish to talk to someone in person.

Type: Article
Title: The key aspects of online support that older family carers of people with dementia want at the end of life: A qualitative study
Open access status: An open access version is available from UCL Discovery
DOI: 10.1080/13607863.2019.1642299
Publisher version: https://doi.org/10.1080/13607863.2019.1642299
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: Dementia, End of life, Palliative care, Caregivers, Internet
UCL classification: UCL
UCL > Provost and Vice Provost Offices
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 Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > UCL Medical School
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences
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/10077635
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