Care commissioning for end of life care and dementia: how evidence based is current practice

Talk Code: 
Louise Robinson
Richard Lee, Zoe Marie Gotts, Nicole Baur, Emma McLellan (1), Claire Goodman (2)
Author institutions: 
Newcastle University (1), University of Hertfordshire (2)


Research reveals that the organisation of end of life (EoL) care for people with dementia is suboptimal despite widespread acceptance of its importance and rising costs. Clinicians in England have been centrally involved in the commissioning of healthcare since the formation of clinical commissioning groups (CCGS). To date, there has been little guidance on how to commission high quality EOL care, especially in complex areas like dementia. To produce evidence-based commissioning guidance, research is needed to understand how services are currently commissioned, the factors that influence decision-making, and understand specific issues that are unique to areas such as dementia care.


The aim of this mixed methods study was to understand existing approaches to commissioning good quality community-based, EoL care for people dying with and from dementia in England. We conducted i) a narrative literature review to identify current policy and empirical work to outline good practice in this area and ii) qualitative research to explore commissioners’ priorities for EoL care for people dying with or from dementia and barriers and enablers to commissioning for this population.


We identified 19 national policy documents and 42 academic papers relevant to the commissioning of: i) dementia in EoL care; ii) dementia care and iii) EoL care. Academic evidence specific to EoL care was limited, but three core themes were identified in the literature: (1) the importance of joint commissioning; (2) the lack of clarity in the commissioning process and who should play what role; and (3) facilitators and barriers to commissioning. Twenty commissioners were interviewed from eight CCGs and five local authority adult services across England. Thematic analysis of the interview data revealed many commonalities with the reviewed literature, in four key themes: (1) organisation of commissioning; (2) commissioning expertise; (3) end of life care and dementia: integration issues; and (4) the art of ‘specification’. Commissioners identified government priorities, a lack of clarity over accountability and budgets and their own inexperience, as factors that could all detract from local commissioning decisions. There was a consensus that stronger collaborative working between health and social care was needed, but this was impeded by several structural and organisational barriers. Contract specification was described as an emerging art form, as relationships with multiple providers replace block contracts which lacked detail.


There is a gap in the guidance and strategies for EoL care specifically for people with dementia despite a consensus that the quality of EoL care for people with dementia needs to be improved. Clinical commissioners are still familiarising themselves with a new system and drawing on guidance that is non-standardised, fragmented, and difficult to understand. Further work is needed to address this important gap in such a complex area.

Submitted by: 
Louise Robinson
Funding acknowledgement: 
This presentation presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research programme (Grant Reference Number RP-PG-0611-20005). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.