Empowering Better End of Life Dementia Care (EMBED-Care)
EMBED-Care is funded for six years by a £4.7m grant from the ESRC-NIHR Dementia Research Initiative.
It is led by Professor Liz Sampson (UCL) and Professor Catherine Evans (KCL).
EMBED-Care Background
Dementia is the commonest cause of death in the UK. By 2040 it is estimated that annually 220,000 people will die with dementia, with many experiencing distressing symptoms like pain and agitation. Access to good care for people with dementia towards end of life is highly unequal. In the UK, those who make decisions about care and develop policy do not have sufficient information to deliver solutions to improve care that focuses on the person and their needs or to plan future services, for which there will be increasing demand. Since we set up the programme, the COVID-19 pandemic, has highlighted this inequality in care even further.
EMBED-Care brings together collaborators, clinicians, policy makers, patients and families to form a network, which will inform our work. Our six interconnected projects will lead to the development and testing of an intervention, which people with dementia, informal carers and health and social care professionals will help design. The intervention will prioritise comfort and what is important to each person to ensure the right services are in the right place at the right time. People with young onset and rapidly progressive prion dementia will benefit from better understanding of their needs. Through EMBED-Care we will provide evidence and generate a step-change in how care is provided for people of any age with any type of dementia to maximise their quality of life.
We will spark public conversations on dying with dementia, engage the public in our work by combining art and science through our policy and public engagement work.
To contact the EMBED-Care team, please email: dop.embedcare@ucl.ac.uk
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Programme Team
Throughout the EMBED-Care Programme we will draw on the expertise of leaders in dementia care and research. We are building capacity in the field of palliative dementia care by developing the next generation of leaders in this field and the future generation through our five PhDs. All members of the Programme Steering Committee and our PhD students have provided a brief biography below.
Professor Liz Sampson is the Principal Investigator for the ESRC/NIHR Empowering Better End of life Dementia Care (EMBED-Care) programme grant and a consultant in liaison psychiatry at the Royal London Hospital for East London Foundation Mental Health Trust. Her epidemiological and health services research focusses on key symptoms i.e. pain and delirium and the care settings (acute hospitals) where many people with dementia will be towards the end of life. Liz trained at Birmingham University Medical School, completed her MD at the Institute of Neurology and her Masters in Epidemiology at the London School of Hygiene and Tropical Medicine.
Professor Catherine Evans is co-lead for the EMBED-Care programme. Catherine is a clinical academic in palliative care. She holds a joint post between the Cicely Saunders Institute, King’s College London and Sussex Community NHS Foundation Trust as a Professor of Palliative Care and Honorary Nursing Consultant. Details of her publications and research grants available https://kclpure.kcl.ac.uk/portal/catherine.evans.html
Programme Team
| Prof Janet Anderson | Prof Janet Anderson is Professor of Quality of Care for Older People at City, University of London, and an adjunct Associate Professor at University of Stavanger, Norway. She is a co-investigator on the EMBED-Care programme grant and her disciplinary background is psychology and human factors. Her research has advanced the theory and practice of resilient healthcare for quality improvement, and she has worked in diverse clinical settings, including emergency departments, older people’s care, care homes, and community settings. Her other main research interest is interprofessional teamwork in healthcare. Her research has produced a number of practical guides and tools for healthcare professionals, including the CARe QI handbook, the QUASER Hospital Guide and the Evaluation Toolkit. |
| Tofunmi Aworinde | Tofunmi Aworinde is a PhD training Fellow and Research Assistant on the Empowering Better End of Life Dementia Care (EMBED-Care) programme, based at King’s College London. Tofunmi completed his BSc in Psychology and MSc in Clinical Mental Health Sciences at University College London. He has an interest in research with people with dementia to improve care. His current work is to develop an intervention incorporating a holistic assessment and clinical decision support tools to enhance shared decision-making with people with dementia living at home, their family carers and health and social care professionals. |
| Dr Bridget Candy | Dr Bridget Candy is a principal research fellow at the UCL Marie Curie Palliative Care Research Department. Bridget research focus is in the generation of systematic reviews relevant to palliative care. With the aim to give clarity on what we know, what is relevant to practise and how we may more useful develop interventions, her interests are in the use of rigorous and innovative approaches in evidence synthesis. Bridget started her career as a health professional, she has completed a PhD in Mental Health sciences at UCL and a Master’s in Medical Demography at the London School of Hygiene and Tropical Medicine. |
| Sophie Crawley | Sophie Crawley is a Research Fellow working on the ESRC/NIHR Empowering Better End of life Dementia Care (EMBED-Care) programme grant. She is primarily based within workstream 3 of the programme; a cohort study which aims to explore the key unmet palliative care needs of people living with dementia and their family carers. Sophie is also completing a PhD part time, with her research focusing on grief and social support in family carers of people living with dementia. |
| Ayesha Dar | Ayesha Dar is a Research Assistant on WS6 of the Empowering Better End of Life Dementia Care (EMBED-Care) programme based at King's College London. She completed her undergraduate degree in Psychology and MPhil in Clinical Psychology at The University of Karachi, Pakistan. Prior to joining the EMBED-Care team, Ayesha worked as a Research Assistant at University College London on a dementia-caregiver study which looked at increasing independence at home for people with dementia. |
| Dr Nathan Davies | Dr Nathan Davies is Associate Professor of Ageing and Applied Health Research and Director Centre for Ageing Population Studies (CAPS). He is the lead for WS4 and WS5 for the ESRC/NIHR Empowering Better End of life Dementia Care (EMBED-Care) Programme, leading on intervention development. He has particular interests in ageing, dementia, clinical decision making, unmet complex needs (such as eating and drinking difficulties) and eHealth. |
| Dr Clare Ellis-Smith | Dr Clare Ellis-Smith is a Lecturer in Palliative Care at Cicely Saunders Institute, King’s College London. She completed her PhD in the development and evaluation of a measure, the Integrated Palliative care Outcome Scale for Dementia, to improve assessment and management of symptoms and concerns for people with dementia at King’s College London. Clare graduated with a BSc Occupational Therapy from University of Cape Town. She has an extensive clinical background in older adult mental health and particularly dementia. Her research focuses on assessment and measurement, and complex interventions to improve the lives of people living with dementia and their families. |
| Professor Richard Harding | Professor Richard Harding is Herbert Dunhill Chair of Palliative Care & Rehabilitation at the Cicely Saunders Institute, King's College London. He is Director of the WHO Collaborating Centre, and Vice Chair of the World Hospice Palliative Care Alliance. Richard has a background in social science and social work, and leads the Centre for Global Health Palliative Care at King's College London. He has a particular interest in the development and testing of complex interventions, and in reducing social exclusion from health care. |
| Dr Annabel Farnood | Dr Annabel Farnood is a Postdoctoral Research Associate on the Empowering Better End of Life Dementia Care (EMBED-CARE) programme based at King's College London. Annabel completed her PhD in Nursing at the University of Glasgow, and an MSc at the University of Edinburgh. Her PhD research explored the effects of online self-diagnosis and health information seeking on the patient-healthcare professional relationship. |
| Juliet Gillam | Juliet Gillam is a PhD fellow on the EMBED-Care programme, and based at King's College London. She is undertaking a PhD which aims to explore the use and implementation of digital health in care homes, to help inform the co-design of the EMBED-Care intervention. Juliet completed her undergraduate degree of Psychology and Neuroscience at The University of Nottingham, and MSc at King's College London.Prior to joining the EMBED-Care team, Juliet worked as a Research Assistant on a study which looked at reducing agitation in residents with dementia. |
| Dr Anna Buylova Gola | Dr Anna Buylova Gola is a co-Investigator for the ESRC/NIHR Empowering Better End of life Dementia Care (EMBED-Care) Programme and a Senior Research Fellow in Health Economics. Her research is mainly on evaluation of treatments and services, with particular emphasis on measuring effects and costs of palliative care in complex settings, incorporating carer, family and wider community effects and equity in end-of-life experience and access. Anna has an MSc in Applied Mathematics from the University of Chicago, an MPhil in Economics from Cambridge University and a PhD from Imperial College London. |
| Dr Charlotte Kenten | Dr Charlotte Kenten is a Senior Research Fellow and the Programme Manager for the ESRC/NIHR funded Empowering Better End of Life Dementia Care (EMBED-Care) Programme. Charlotte’s previous research on palliative and end of life care has primarily employed qualitative methods. It has focused on the end of life experiences and preferences of young adults with cancer and increasing consent to organ donation. Charlotte has a PhD in Geography from the University of Sheffield. |
| Dr Nuriye Kupeli | Dr Nuriye Kupeli is a Senior Research Associate and an Alzheimer’s Society Fellow. Her work focusses on family carers’ experiences of continuing compassion while caring for someone living with dementia and its impact on carer wellbeing. Nuriye is a Co-Investigator for the ESRC/NIHR Empowering Better End of life Dementia Care (EMBED-Care) Programme. She is leading a workstream exploring unmet palliative care needs of people living with dementia and its association with quality of life, care transitions and carer experiences. Nuriye completed a BSc in Psychology, an MSc in Advanced Research Methods and a PhD in Health Psychology at the University of Hertfordshire. |
| Professor Simon Mead | After medical training at Cambridge and Oxford Universities and a PhD in the Genetics of Prion Diseases at Imperial College London, Simon Mead is now a Consultant Neurologist and Clinical Lead of the UK National Prion Clinic based at the National Hospital for Neurology, London. Research interests include clinical trial studies involving enrolling CJD or Prion disease patients, discovery of genetic factors that cause or influence Prion diseases and the development of treatments. Ongoing studies include the National Prion Monitoring Cohort, The Development of New Diagnostic Tests for Prion Diseases, Molecular Genetic Analysis of Human Prion Diseases and PRN100 |
| Dr Kirsten Moore | Dr Kirsten Mooreis a social gerontologist and has been engaged in a broad range of research programs to improve the quality of care for older people and people with dementia. Her research interests focus on the care of people with advanced dementia and identifying better ways to support carers to prepare for end-of-life and to understand and process grief. She is a Senior Research Fellow in the Melbourne Ageing Research Collaboration at the National Ageing Research Institute in Australia. Prior to this she worked at the Marie Curie Palliative Care Research Department at University College London. She is co-lead of Work Stream 4 on the Empowering Better End of life Dementia Care (EMBED-Care) Programme. |
| Professor Rumana Omar | Professor Rumana Omar is a co-applicant on the ESRC/NIHR Empowering Better End of life Dementia Care (EMBED-Care) programme grant. She is a Professor of Medical Statistics at the Department of Statistical Science. She leads a Biostatistics Group, based at the Joint Research Office of the NIHR UCLH/UCL Biomedical Research Centre and the Statistics Department. Her research focusses on risk prediction models and trials methodology. |
| Ali-Rose Sisk | Ali-Rose Sisk is a PhD student working within the ESRC/NIHR Empowering Better End of life Dementia Care (EMBED-Care) programme and a registered general nurse. Her research focusses on exploring the palliative care needs of those with young-onset dementia, in particular the physical, psychological, social and spiritual needs of those with Frontotemporal Lobar Degeneration. Ali-Rose trained as a nurse (BSc HONS) at the University College Cork, Ireland where she then completed her Masters which involved developing a dementia care workshop for nursing students. |
| Prof Katherine Sleeman | Prof Katherine Sleeman is Laing Galazka Chair in palliative care at King's College London's Cicely Saunders Institute. She leads on routine data analysis, and public and policy engagement, within the ESRC/NIHR Empowering Better End of life Dementia Care (EMBED-Care) programme grant. She trained in medicine at UCL, did her PhD at the Institute of Cancer Research in London, was an NIHR Clinical Lecturer at King's College London from 2010-2016 and an NIHR Clinician Scientist Fellowship 2016-2021. She is an Honorary Consultant in palliative medicine at King's College Hospital NHS Trust. |
| Professor Rob Stewart | Professor Rob Stewart is a consultant liaison old age psychiatrist at the South London and Maudsley NHS Foundation Trust, and Professor of Psychiatric Epidemiology and Clinical Informatics at King’s College London Institute of Psychiatry, Psychology and Neuroscience. Rob has been academic lead for the Maudsley’s Clinical Record Interactive Search (CRIS) mental healthcare data resource since its development in 2007 and has coordinated CRIS support for a variety of funded projects, including EMBED-Care. Rob’s research interests are in late life mental health and the physical-mental health interface. He trained at the University of Leeds, obtained his MD from there some years later, and his Masters in Epidemiology from the London School of Hygiene and Topical Medicine. |
| Beka Torlay | Rebeka Torlay is a Research Administrator based at the Cicely Saunders Institute, King’s College London. She supports the administration within the EMBED-Care programme, with a particular focus on patient and public involvement. Rebeka has a background in wildlife conservation and studied for her BSc at Susquehanna University and MA at Miami University. |
| Dr Victoria Vickerstaff | Dr Victoria Vickerstaff is a Principal Research Fellow at UCL working at the Research Department of Primary Care and Population Health. She is one of the statisticians supporting the EMBED-Care Programme. Her main research interests are the applied and methodological aspects of clinical trials, including the use of multiple primary outcomes, clustered data and methods for handling missing data. She completed her BSc in Mathematics and Statistics at The University of Warwick and completed both her MSc in Statistics and PhD in Medical Statistics at University College London. |
| Jane Ward | Jane Ward is the PPI Chair for the ESRC/NIHR Empowering Better End of life Dementia Care (EMBED-Care) programme grant. She cared for her mother who had Vascular Dementia full time at home through her end of life until her death in 2013. She is an active member of the Alzheimer’s Society Research Network and has participated in PPI on several End of Life Projects with UCL since 2013. She works part time for a small charity which leads her local Dementia Friendly Communities project and also volunteers for Dementia Adventure. |
| Professor Jason Warren | Professor Jason Warren trained in neurology at the Royal Adelaide Hospital and the National Hospital, Queen Square (FRACP 2000) and subsequently completed a PhD in the functional imaging of the human auditory brain at the Wellcome Department of Cognitive Neurology (2005). He is currently a Wellcome Senior Clinical Fellow. |
| Emel Yorganci | Emel Yorganci is an ESRC PhD Training Fellow as part of the ESRC/NIHR Empowering Better End of life Dementia Care (EMBED-Care) programme grant. Her PhD is focusing on identifying patterns in healthcare utilisation and inequalities towards the end of life for individuals with dementia. Emel's research interests include dementia, end of life, routine data, transitions, social care, hospital admissions, emergency admissions and social inequalities. Emel graduated from Royal Holloway, University of London in 2015 with a BSc Psychology degree. She then completed her MSc in Psychiatric Research in 2016 at King’s College London. |
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This project was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR). ESRC is part of the UK Research and Innovation. The views expressed are those of the author(s) and not necessarily those of the ESRC, UKRI, NHS, the NIHR or the Department of Health and Social Care.