Abstract
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Background
Many have reported the difficulty of defining 'quality' with several concepts
emerging to characterise quality end of life care. 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 carers; however, few have
explored the views about end of life care from the carers' perspective. Aim
To explore the features of 'good' and 'bad' quality end of life care for
people with dementia from the perspective of family carers. Method 1) A
systematic review of qualitative studies which explored family carers' views
of quality end of life care for people with dementia. 2) A qualitative study
with 46 in-depth interviews with carers analysed using thematic analysis
methods. Purposive sampling was used to recruit 1) family carers of someone
who had recently received a diagnosis of dementia, 2) family carers currently
caring for someone with dementia, and 3) bereaved family carers. Results Many
elements to 'good' care were identified including: tailoring care, attention
to the individual, respect and dignity. Participants perceived some basic
principles such as compassion were lacking, particularly from nurses. The
finer details of care such as clothing and appearance were important
manifestations of social identity and personhood. Care for the carer was also
important, with carers often being left to act as a care manager and navigate
the health and social care systems. Conclusion At end of life not everyone
with dementia will require input from specialist palliative care services;
there are many basic principles to good quality end of life care. This study
suggests that end of life care for someone with dementia may not be that
different to dementia care in general.
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