RT Journal Article SR Electronic T1 Barriers to providing end-of-life care for people with dementia: a whole-system qualitative study JF BMJ Supportive & Palliative Care JO BMJ Support Palliat Care FD British Medical Journal Publishing Group SP 103 OP 107 DO 10.1136/bmjspcare-2011-000178 VO 2 IS 2 A1 Karen Harrison Dening A1 Wendy Greenish A1 Louise Jones A1 Uttara Mandal A1 Elizabeth L Sampson YR 2012 UL http://spcare.bmj.com/content/2/2/103.abstract AB Objectives People with dementia may experience poor quality end-of-life care. The complex health and social care system may not meet their needs. The authors' objectives were to identify perceived and real barriers that prevent people with dementia and their carers receiving end-of-life care of acceptable quality. Methods A whole-system qualitative study as part of a rapid participatory appraisal. The authors used semistructured interviews and focus groups with recently bereaved family carers of a person with dementia and a wide range of health and social care staff (50 participants). Thematic content analysis was used to analyse data and to identify barriers. Results Five areas were identified as barriers to providing good end-of-life care: impact of hospitalisation, care pathways, advance care planning, impact on carers, staff skills and training. A wide range of health and social professionals provided end-of-life care to people with dementia but with little coordination or knowledge of each other's activity or remit. Care was fragmented and ad hoc leading to crises and inappropriate hospital admissions. Staff lacked confidence and requested more training. Many of the identified barriers were underpinned by feelings of uncertainty regarding disease trajectory and the perceived futility of interventions. Areas of good practice were specialist nurse support to family carers and ‘in reach’ to nursing homes. Conclusions Qualitative methods of service evaluation facilitated a broader and deeper understanding of a range of perspectives, which, with other components of rapid participatory appraisal, generated potential solutions to improve care.