• Nathan Davies, Greta Rait, Laura Maio, and Steve Iliffe.
• Research Department of Primary Care and Population Health (PCPH), University College London, London, UK.
• Palliat Med. 2017 Sep 1; 31 (8): 726-733.

BackgroundPeople with dementia have been described as the 'disadvantaged dying' with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers' perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia.AimThis study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia.DesignQualitative study using in-depth interviews and analysed using thematic analysis.Setting/ParticipantsPurposive sampling from a third sector organisation's caregiver network was used to recruit 47 caregivers in England (2012-2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers.ResultsThree over-arching themes were derived from the interviewees' discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness.ConclusionEnd-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

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