Family caregivers' conceptualisation of quality end-of-life care for people with dementia: A qualitative study.
BACKGROUND
People 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.


OBJECTIVE
This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia.


METHODS
Qualitative study using in-depth interviews and analysed using thematic analysis.


METHODS
Purposive 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.


RESULTS
Three over-arching themes were derived from the interviewees' discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness.


CONCLUSIONS
End-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.
Research Department of Primary Care and Population Health (PCPH), University College London, London, UK.
Nathan
N
Davies
Research Department of Primary Care and Population Health (PCPH), University College London, London, UK.
Greta
G
Rait
Research Department of Primary Care and Population Health (PCPH), University College London, London, UK.
Laura
L
Maio
Research Department of Primary Care and Population Health (PCPH), University College London, London, UK.
Steve
S
Iliffe
D000368:Aged; D000369:Aged, 80 and over; D001290:Attitude; D017028:Caregivers / Q000523:psychology*; D003704:Dementia; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D011788:Quality of Life; D013727:Terminal Care
Dementia; caregiver; end-of-life care; palliative care; quality in health care