Supporting Excellence in End of life care in Dementia (SEED programme)

Study Code / Acronym
Award Number
Programme Grants for Applied Research
Status / Stage
15 October 2013 -
13 January 2019
Duration (calculated)
05 years 02 months
Funding Amount
Funder/Grant study page
Contracted Centre
Northumbria Healthcare NHS Foundation Trust
Contracted Centre Webpage
Principal Investigator
Professor Dame Louise Robinson
PI Contact
WHO Catergories
Models across the continuum of care
Disease Type
Dementia (Unspecified)

CPEC Review Info
Reference ID82
ResearcherReside Team


Study Code / AcronymSEED
Award NumberRP-PG-0611-20005
Status / StageCompleted
Start Date20131015
End Date20190113
Duration (calculated) 05 years 02 months
Funder/Grant study pageNIHR
Contracted CentreNorthumbria Healthcare NHS Foundation Trust
Contracted Centre Webpage
Funding Amount£1,676,294.00


Our ageing population will mean more people with long term illnesses like dementia leading to an increased need for community-based end of life care for those with complex needs. People with dementia already receive poorer quality end of life care compared to those with cancer, with more hospital admissions and worse symptom control. NICE commissioning guidance has developed a framework for an integrated care pathway (ICP) for end of life care in dementia, and identified best practice examples, but a lack of empirical UK research in this area is limiting wider implementation. An ongoing research programme, The Marie Curie Dementia Programme (MCDP), aims to determine the health/social care needs and costs of providing end of life care to people with advanced dementia, through a prospective cohort study, and then develop, and pilot, a complex specialist intervention to address these needs. Research environment The multi-disciplinary team are from centres of excellence in dementia and palliative care research; Newcastle University, the academic host, is internationally recognised for dementia research and Marie Curie for end of life research. We will seek programme adoption by NIHR DeNDRoN. Research plan Our programme will build upon and complement quantitative data from the MCDP by exploring, in-depth, how end of life care in dementia is currently organised and delivered in community settings and whether existing end of life tools support the provision of good quality care in dementia. Though six related and interlinked workstreams (WSs), we will develop an ICP, following MRC guidance on complex interventions, to support professionals to deliver good quality care and also produce evidence-based guidance for commissioners. We will begin in WS1 with a series of systematic reviews mapping existing guidance, care pathways and national best practice and identification of person-centred outcomes, via a Q-sort study, to measure this care (objectives1,3). In WS2 we will explore the delivery of good quality care in practice via an in depth qualitative study (objectives1,3). Using data from WS1,2 and MCDP, we will develop an evidence-based ICP (WS3) and educational resources to support its use in practice and then in WS4, undertake a pilot study of the ICP, with process evaluation and nested qualitative study, to determine acceptability and feasibility (objective 2). To ascertain the relative efficiency of the developed ICP compared with alternative care pathways, we will undertake in WS5, economic modelling using evidence from earlier WSs and MCDP; we will also carry out a Willingness to Pay exercise to explore the cost-consequences of aspects of the ICP (objectives 1,3). Finally in WS6 we will explore how care is currently commissioned, and using data from WS1,2,3,5 and MCDP, develop and disseminate evidence-based guidance for commissioners (objectives 1,3). Project outputs and dissemination plans The NHS will be presented with tools to support the organisation/delivery of better quality care: evidence-based commissioning guidance, a care pathway with accompanying educational resources to facilitate use in practice, and person-centred outcomes to measure their impact.


The overall aim of the programme is to support professionals, both commissioners and providers, to deliver good quality, community-based end of life care in dementia. Our three objectives are: 1. To identify which aspects of existing end of life care in dementia are effective and efficient. 2. To develop, implement and evaluate an evidence-based integrated care pathway (ICP), and associated educational resources, to support the provision of good quality end of life care in dementia. 3. To determine how community-based end of life care in dementia should be organised and commissioned.