Quality end-of-life care for dementia: What have family carers told us so far? A narrative synthesis

BACKGROUND: People with dementia do not always receive good quality end-of-life care, with undertreated pain, aggressive medical interventions and limited access to hospice care being common. Family carers often provide the majority of informal care for people with dementia, therefore may be best placed to comment on quality of care. AIM: We explored what quality end-of-life care for dementia is from the perspective of family carers. DESIGN: A review of qualitative evidence taking a systematic approach using a narrative synthesis with tabulation, textual description of studies and thematic analysis as tools, following the guidelines from the Economic and Social Research Council. DATA SOURCES: Keywords and subject headings were searched in MEDLINE, EMBASE, CINAHL, SCIE and PsycINFO for studies from 1990 in April 2012 and updated in May 2013. Reference lists were checked and citation searches undertaken. RESULTS: Eight studies were included. There was an overarching theme of ‘A family’s belief of death and their choice of treatment’. Three further themes were then identified to explain family carers’ beliefs: the relationship with professionals as a core component of care quality; emotional and commitment pressures of caring and finally, family carers’ ability to think about death and dying. CONCLUSION: It is difficult to define what constitutes high-quality end-of-life care for people with dementia from the perspective of family carers. Their views expressed in the literature appear to demonstrate more variation of preference of care and treatment and their uncertainty of this.