Davies, N; (2014) Quality end of life care for people with dementia: The views and experiences of family carers. Doctoral thesis , UCL (University College London).

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Abstract

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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