Dying well with dementia: qualitative examination of end-of-life care

Abstract

Background: People with dementia often die badly, receiving end-of-life care of poorer quality than that given to those who are cognitively intact.

Aims: To define good end-of-life care for people with dementia and identify how it can be delivered across care settings in the UK.

Method: In-depth interviews were conducted with 27 bereaved family carers and 23 care professionals recruited from the community, care homes, general hospitals and continuing care units. Data were analysed using the constant comparison method.

Results: The data highlighted the challenge and imperative of 'dementia-proofing' end-of-life care for people with dementia. This requires using dementia expertise to meet physical care needs, going beyond task-focused care and prioritising planning and communication with families.

Conclusions: The quality of end-of-life care exists on a continuum across care settings. Together, the data reveal key elements of good end-of-life care and that staff education, supervision and specialist input can enable its provision.