Recipient organisationNorthumbria Healthcare NHS Foundation TrustSource-published name: Northumbria Healthcare NHS Foundation Trust
Funding£1.7M
PeriodOct 2013 — Jan 2019
In plain English
AI plain-English summary
People dying with dementia in the UK receive worse symptom control and face more hospital admissions than those with cancer. This programme aims to change that by building a practical, evidence-based care pathway for community-based end-of-life care in dementia. The problem is clear: a growing ageing population means more people will die with complex dementia needs, yet existing care is poorly organised and lacks a solid UK evidence base. NICE has outlined a framework, but without empirical research, it cannot be widely implemented. The SEED programme fills that gap by systematically reviewing current guidance, studying how care is actually delivered in communities, and developing an integrated care pathway (ICP) with supporting educational resources. If successful, the programme will give NHS commissioners and providers concrete tools: a tested care pathway, person-centred outcome measures, and commissioning guidance. This could reduce unnecessary hospital admissions, improve symptom control, and ensure people with dementia die with dignity in their own homes rather than in acute wards. The impact is on a quiet but vital part of the health system—how end-of-life care is organised and paid for at the local level.
View original technical description
Aims and objectives The overall aim of the programme is to support professionals, both commissioners and providers, to deliver goodquality, 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. Background and rationale 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. Dissemination will be co-ordinated via Alzheimer s Society, Marie Curie and RCGP. Relevant expertise of the team Robins
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