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Empowering Better End-of-Life Dementia Care (EMBED-Care): A mixed methods protocol to achieve integrated person-centred care across settings.

  • Sampson, Elizabeth L1, 2
  • Anderson, Janet E3
  • Candy, Bridget1
  • Davies, Nathan1, 4
  • Ellis-Smith, Clare5
  • Gola, Anna1
  • Harding, Richard5
  • Kenten, Charlotte1
  • Kupeli, Nuriye1
  • Mead, Simon6, 7
  • Moore, Kirsten J1
  • Omar, Rumana Z8
  • Sleeman, Katherine E5
  • Stewart, Robert9, 10
  • Ward, Jane1
  • Warren, Jason D11
  • Evans, Catherine J5, 12
  • 1 Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK.
  • 2 Barnet Enfield and Haringey Mental Health Trust Liaison Psychiatry Team, North Middlesex University Hospital, London, UK.
  • 3 Department of Adult Nursing, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College London, London, UK.
  • 4 Centre for Population Ageing Studies, Research Department of Primary Care and Population Health, University College London, London, UK.
  • 5 Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College London, London, UK.
  • 6 National Prion Clinic, National Hospital for Neurology and Neurosurgery, University College London Hospitals NHS Foundation Trust, London, UK.
  • 7 MRC Prion Unit at UCL, Institute of Prion Diseases, UCL, London, UK.
  • 8 Department of Statistical Science, University College London, London, UK.
  • 9 Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.
  • 10 South London and Maudsley NHS Foundation Trust, London, UK.
  • 11 Dementia Research Centre, UCL Queen Square Institute of Neurology, University College London, London, UK.
  • 12 Sussex Community NHS Foundation Trust, Brighton, UK.
Published Article
International journal of geriatric psychiatry
Publication Date
Aug 01, 2020
DOI: 10.1002/gps.5251
PMID: 31854477


Globally, the number of people with dementia who have palliative care needs will increase fourfold over the next 40 years. The Empowering Better End-of-Life Dementia Care (EMBED-Care) Programme aims to deliver a step change in care through a large sequential study, spanning multiple work streams. We will use mixed methods across settings where people with dementia live and die: their own homes, care homes, and hospitals. Beginning with policy syntheses and reviews of interventions, we will develop a conceptual framework and underpinning theory of change. We will use linked data sets to explore current service use, care transitions, and inequalities and predict future need for end-of-life dementia care. Longitudinal cohort studies of people with dementia (including young onset and prion dementias) and their carers will describe care transitions, quality of life, symptoms, formal and informal care provision, and costs. Data will be synthesised, underpinned by the Knowledge-to-Action Implementation Framework, to design a novel complex intervention to support assessment, decision making, and communication between patients, carers, and inter-professional teams. This will be feasibility and pilot tested in UK settings. Patient and public involvement and engagement, innovative work with artists, policymakers, and third sector organisations are embedded to drive impact. We will build research capacity and develop an international network for excellence in dementia palliative care. EMBED-Care will help us understand current and future need, develop novel cost-effective care innovations, build research capacity, and promote international collaborations in research and practice to ensure people live and die well with dementia. © 2019 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.

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