Supporting excellence in end of life care (SEED): Workstreams 1 & 2

  • Research type

    Research Study

  • Full title

    Supporting Excellence in End of life care in Dementia via individual care plans (SEED): Current practice and desired outcomes (Workstreams 1 & 2)



  • Contact name

    Louise Robinson

  • Contact email

  • Sponsor organisation

    Northumbria Healthcare NHS Foundation Trust

  • Research summary

    People with dementia receive poorer end of life care compared to those with cancer. The idea for this research began with Alzheimer’s Society carer groups. It aims to support professionals to deliver good quality, community-based end of life care in dementia. Our key outputs include:
    i) Individualised care planning (ICP) for end of life care in dementia
    ii) Educational resources to support the use of i) and
    iii) Guidance for clinical commissioners.
    There are 6 workstreams (WSs). In WS1 we will improve our understanding about what is already known about the organisation of end of life care for people with dementia and their families. We will review current guidance and care pathways to find out which aspects are supported by evidence and which are not. In WS2, we will work with people with dementia, carers and professionals to examine how professionals deliver end of life care to people with dementia and their families, looking for examples of good practice and solutions to meet dementia-specific problems. We will also identify person-centred outcomes to measure the quality of this care (WS1&2). To develop ICP (WS3), we will combine the above data with data from the Marie Curie Dementia Programme (MCDP) which is looking at resource use by people with advanced dementia and their families. In WS4 we will carry out a pilot trial to see how ICP fits into practice, and whether we have identified meaningful outcomes to measure the quality of care. In addition, we will investigate the likely cost-effectiveness of ICP versus existing care (WS5). Finally we will create guidance for clinical commissioners on the provision of good quality end of life care in dementia (WS6). We will send our outputs to a wide range of audiences including patients and their families, commissioners and policy makers.

  • REC name

    North East - Newcastle & North Tyneside 1 Research Ethics Committee

  • REC reference


  • Date of REC Opinion

    19 Dec 2013

  • REC opinion

    Favourable Opinion