£4.7m research grant set to improve care for people with dementia

The largest ever research grant to improve palliative and end of life care for people with dementia and their carers in the UK (£4.7m) has been awarded to researchers at the Marie Curie Palliative Care Research Department, UCL, and the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King’s College London.  

The programme grant called Empowering Better End of Life Dementia Care Programme (EMBED-Care) will create new ways of supporting patients with advanced dementia, where they live and receive care. The research will build understanding on the 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 these vital services. The research is one of four collaborative projects being funded by the ESRC-NIHR Dementia Research Initiative 2018, which aims to improve the lives of people living with dementia across the UK.  

Further research is essential in informing better quality of care and ensuring that people living with dementia receive the support and guidance they need to plan for their future care while they still have the capacity, and to have important discussions with those closest to them. The researchers say the £4.7m investment is a huge step in the right direction to prioritising palliative and end of life care for people living with dementia, now and in the future. With dementia the most common cause of death in the UK, it is vital that healthcare professionals can support people’s individual care needs as well as support families and carers. Palliative and end of life care aims to reduce pain and manage symptoms, so people with dementia can maintain the best possible quality of life as death approaches – whether that is at home, in hospital or in a care home. However, research shows care for people living with dementia is not always underpinned by a palliative approach. Determining a person’s palliative care needs, then initiating and delivering this care for patients with dementia is one of the research gaps identified by the Palliative and end of life care Priority Setting Partnership with the James Lind Alliance.

Dr Catherine Evans, clinical academic in palliative care at the Cicely Saunders Institute, Faculty of Nursing, Midwifery & Palliative Care, King’s College London, said:

'We are delighted to have received this major award from the ESRC-NIHR working with colleagues from UCL. The work will transform the provision of palliative dementia care for people today and in the future. Our research will deepen understanding on living and dying with dementia and create new models of integrated palliative dementia care delivered in mainstream services where people with dementia reside and receive care.  We intend to create a step-change in this priority under-researched field through innovative research and building research capacity to sustain change.' 

Dr Liz Sampson, a clinical academic in dementia care at the Marie Curie Palliative Care Research Department, UCL, said:

'We are so pleased that the ESRC-NIHR are funding this large grant. This is a hugely under-researched area. We know, 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 towards the end of life. This programme includes innovative studies involving under-represented groups such as those with rapidly progressive and young onset dementias, working across UCL with the MRC Prion Unit and the Dementia Research Centre at the Institute of Neurology. The whole programme will act as a platform to sustain change by investing in early career researchers and forming a global Network for Excellence in Palliative Dementia Care.'

Helen Findlay, who cared for her mother who lived with vascular dementia for 10 years, said:

'After we had been told by her GP that he considered she had up to a year of life left, trying to raise end of life concerns with her and with the professionals was like taking to a boat to cross the Atlantic but without an engine, oars or a sail to help navigate. The possibility of sinking was very high. The ESRC-NIHR funding this award is brilliant as the study has the potential for saving a lot of deep emotional angst and upset as well as help empower individuals with dementia, their families and professionals by enabling them to work together to greatly improve the end of life experience. We have one chance to get end of life care right.'

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Notes to Editor

About Cicely Saunders Institute

The Cicely Saunders Institute is the world’s first purpose-built Institute for Palliative Care and Rehabilitation, named after Dame Cicely Saunders (1918–2005), recognised internationally as the founder of the modern hospice movement 50 years ago. The Institute is a partnership of Cicely Saunders International, King’s College London and associated local clinical services to bring together clinical and academic teams to innovate, discover, evaluate and translate solutions to improve care, symptom control and quality of life for patients and families affected by serious and progressive illnesses. The Institute is part of the Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care in King’s College London.

Find out more csi.kcl.ac.uk | Follow us on Twitter @CSI_KCL

About King’s College London

King's College London is one of the top 10 UK universities in the world (QS World University Rankings, 2018/19) and among the oldest in England. King's has more than 29,600 students (of whom nearly 11,700 are graduate students) from some 150 countries worldwide, and some 8,000 staff. The university is in the top seven UK universities for research earnings and has an overall annual income of more than £738 million.

For more information, see our King’s in Brief pages | Follow us on Twitter @KingsCollegeLon

About Marie Curie

Please note – we are now called ‘Marie Curie’ (not Marie Curie Cancer Care) 

Marie Curie – care and support through terminal illness 

Marie Curie is the UK’s leading charity for people with any terminal illness. The charity helps people living with a terminal illness and their families make the most of the time they have together by delivering expert hands-on care, emotional support, research and guidance. Marie Curie employs more than 2,700 nurses, doctors and other healthcare professionals, and with its nine hospices around the UK, is the largest provider of hospice beds outside the NHS. 

Marie Curie is the largest charitable funder of palliative and end of life care research. The charity invests nearly £3million, each year, in research to help inform better quality of care for people with any terminal illness, and the people who care for them.  

For more information visit www.mariecurie.org.uk

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About Marie Curie Palliative Care Research Department at UCL

An internationally recognised centre of research with a team of over 20 full-time researchers. The department receives core funding from Marie Curie and also undertakes research funded by the National Institute for Health Research (NIHR), the Alzheimer's Society and other research funders. The department has particular research strengths in the areas of palliative care for people with dementia, prognostication in advanced cancer and the management of cancer-related fatigue.

About UCL (University College London)

UCL was founded in 1826. We were the first English university established after Oxford and Cambridge, the first to open up university education to those previously excluded from it, and the first to provide systematic teaching of law, architecture and medicine. We are among the world's top universities, as reflected by performance in a range of international rankings and tables. UCL currently has over 41,500 students from 150 countries and over 12,500 staff. Our annual income is more than £1 billion.

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About ESRC-NIHR Dementia Research Initiative 2018

The ESRC-NIHR Dementia Research Initiative was launched to boost social science research in dementia, with the goal of creating a step change in social science funding of dementia from small projects to a critical mass of expertise. The 2018 funding follows an earlier 2012 joint initiative that provided £20 million for six research projects on dementia interventions and care. The projects have involved people with lived experience of dementia as co-researchers, advisors and participants, and have developed social science methodology and capacity in dementia research.

 The four projects funded by the ESRC-NIHR Dementia Research Initiative 2018 are:

• EMpowering Better End of life Dementia Care (EMBED-Care Programme). University College London and King’s College London.
• The impact of multicomponent support groups for those living with rare dementias. University College London, Bangor University and Canterbury Christ Church University.
• DETERMIND: DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their family carers. University of Sussex, London School of Economics (LSE), King’s College London (KCL), Newcastle University, University of York and University of Cambridge.
• The APPLE Tree programme:  Active Prevention in People at risk of dementia through Lifestyle, bEhaviour change and Technology to build REsiliEnce. UCL, University of New South Wales, University of Michigan, University of East Anglia, University of Exeter, North East London NHS Foundation Trust and INSERM (Institut national de la santé et de la recherche médicale).