The Empowering Better End of Life Dementia Care (EMBED-Care) Programme

A large grant to improve end of life care for people with dementia and their carers (£4.7m) has been awarded to INTERDEM members. Dr Liz Sampson, Marie Curie Palliative Care Research Department, UCL, is the principal investigator working with Dr Catherine Evans and her team from the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King’s College London. Given the increasing numbers of people who will die with dementia, we have to find better ways to deliver person-centred care that will improve comfort and quality of life. The Empowering Better End of Life Dementia Care Programme (EMBED-Care) will create new ways of supporting people dying with or from dementia. We will use cohort studies and big data to build understanding of current and future needs for dementia palliative care, how people with dementia move through the health and social care system and develop new ways to deliver vital services. We will explore the use of telehealth in this context.

This programme includes innovative studies with under-represented groups; rapidly progressive and young onset dementias, working with the MRC National Prion Unit and the Dementia Research Centre at the Institute of Neurology, UCL. Our collaborators include national and international third sector and policy organisations including the European Association for Palliative Care, Dementia UK, The Dementia Engagement and Empowerment Project (DEEP) and academic partners from Australia, The Netherlands, USA and Ireland. There will be extensive and innovative public engagement to promote a national and international discourse on dying with dementia.

We are a multidisciplinary team comprising old age psychiatry, neurologists, palliative care physicians, community nursing, occupational therapists, social scientists and expert methodologists in big data, epidemiology, implementation and human factors, statistics, health economics, evidence synthesis and clinical trials. The programme is a platform for early and mid-career researchers and will form a Network for Excellence in Palliative Dementia Care. We are recruiting a senior research fellow/ programme manager (see For further information, please contact Dr Liz Sampson:

The research is funded by the ESRC-NIHR Dementia Research Initiative 2018.

The EMBED-Care project team

marie_curie_groupUniversity College London:

  • Dr Elizabeth Sampson (PI)-Marie Curie Palliative Care Research Department (INTERDEM member)
  • Dr Nathan Davies-Marie Curie Palliative Care Research Department/ Primary Care and Population Health (INTERDEM member)
  • Dr Nuriye Kupeli- Marie Curie Palliative Care Research Department
  • Dr Anna Gola- Marie Curie Palliative Care Research Department
  • Dr Bridget Candy- Marie Curie Palliative Care Research Department
  • Dr Kirsten Moore – Marie Curie Palliative Care Research Department
  • Professor Simon Mead-MRC Prion Unit
  • Professor Rumana Omar –Statistical Science
  • Professor Jason Warren –Dementia Research Centre
  • Jane Ward (expert by experience)


Kings College, London

  • Dr Catherine Evans (Co-PI)-Cicely Saunders Institute
  • Dr Katherine Eleanor Sleeman- Cicely Saunders Institute
  • Dr Clare Ellis-Smith- Cicely Saunders Institute
  • Professor Richard Harding – Cicely Saunders Institute
  • Dr Janet Anderson- Florence Nightingale Faculty of Nursing and Midwifery
  • Professor Robert Stewart –Psychological Medicine