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

Abstract

Objectives: 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 carers of people with dementia face towards the end of life and the 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 methods.

Results: Most 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 human interaction in receiving support.

Conclusions: This study has identified the key challenges for 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 contact, as many carers still wish to talk to someone in person. This could help alleviate pressures which health and social care systems currently face.

Keywords:

• Dementia
• end of life
• palliative care
• caregivers
• internet

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This study/project is funded by the National Institute for Health Research (NIHR) School for Primary Care Research (UCL Award 6, 322). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.