Context, mechanisms and outcomes in end of life care for people with advanced dementia

Background: The majority of people with dementia in the UK die in care homes and many receive sub-optimal care. We aimed to understand the care home context and the mechanisms active in these establishments which create... [ view full abstract ]

Background: The majority of people with dementia in the UK die in care homes and many receive sub-optimal care. We aimed to understand the care home context and the mechanisms active in these establishments which create enablers and barriers to the outcome of good end-of-life care for people with advanced dementia.

Method: We recruited a purposive and representative sample of health care professionals providing care who took part in qualitative interactive interviews, completed between September 2012 and October 2013. Transcripts were thematically analysed and then conceptualised according to context, mechanisms and outcomes, exploring relationships between these according to realist logic. The settings were private care homes and supportive services provided by the National Health Service including memory clinics, mental health and commissioning services in London, United Kingdom. The participants included 14 health and social care professionals including health care assistants, care home managers, commissioners for older adults' services and nursing staff.

Results: The provision of palliative care for people with advanced dementia is enabled by addressing physical needs including symptom management, the prioritisation of psychosocial and spiritual care, development of relationships with family carers, and continuous integrated care provided by a multidisciplinary team. The care home context may currently support barriers to good end-of-life care, such as: an emphasis on financial efficiency over person centred care; care homes functioning within a complex health and social care system, societal and family attitudes towards staff; staff training and experience, governance and bureaucratisation of care home services; advance care planning and staff characteristics. Mechanisms that influence the quality care include: level of care home staff confidence and resources for improving end of life care and supporting families.

Conclusions: A realist approach enabled a deeper understanding of the care home environment for people with dementia who are close to death. Contextual factors within care homes may be persistent and negatively impact on the quality of care. Local level mechanisms may be more amenable to improvement. However, systemic changes to the care home environment are necessary to promote consistent, equitable and sustainable high quality end of life dementia care across the UK care home sector.