Supporting Excellence in End of Life Care in Dementia (SEED)

Supporting Excellence in End of Life Care in Dementia (SEED)

The SEED programme is funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (RP-PG-0611-20005) and is led by the University of Newcastle, in collaboration with partner organisations including University College London, the University of Hertfordshire and the National Council of Palliative Care.

Co-Applicant Dr Liz Sampson, MCPCRD will lead Work stream 1 (WS1).

The Supporting Excellence in End of Life Care in Dementia (SEED) programme aims to support professionals, both commissioners and providers, to deliver good quality, community-based end of life and palliative care in dementia, through the development of an Integrated Care Pathway (ICP).

In order to provide a strong theoretical and practical foundation for the development of the ICP, Workstream 1 (WS1) led by Dr Liz Sampson, will (i) map the evidence base for existing end of life care guidance and/or pathways in dementia, (ii) update recent comprehensive reviews of quality indicators in end of life and palliative care, and psychometric properties of instruments to measure end of life care in dementia, and (iii) identify existing UK services in end of life care in dementia and map national "best practice" sites. An initial "broad sweep" survey of UK services will lead to an in-depth service evaluation of selected services to inform the development of the ICP.

WS1 Selected output

Amador S, Sampson EL, Goodman C & Robinson L (in preparation) Quality indicators for palliative care: How useful are they for the assessment of end-of-life care in dementia? BMJ Quality and Safety

Amador S, Goodman C, Robinson L & Sampson EL & SEED research team (2016) UK end-of-life care services in dementia, initiatives and sustainability: results of a national online survey BMJ Supportive and Palliative Care doi:10.1136/bmjspcare-2016-001138

Amador S., Goodman C., Robinson L., Sampson E.L. 'Development of a conceptual framework to assess quality in end of life care in dementia: contextual, structural, process and outcome variables' Building Bridges P1-093, Page 89. 14th World Congress of the European Association for Palliative Care, Copenhagen, Denmark, 8 May - 10 May 2015.

Amador S, Goodman C, Sampson EL & Robinson L Assessing quality in end-of-life care in dementia In Exley C (Chair) Dementia and Dying: Perspectives on good end-of-life care. Symposium at the 44th Annual British Society of Gerontology conference, Newcastle upon Tyne, 1-3 July 2015.

For further information about the SEED programme please visit the project's web site.