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

The £4.7 million grant will be used to fund research to help understand 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 Economic and Social Research Council and National Institute for Health Research (ESRC-NIHR) Dementia Research Initiative 2018, which aims to improve the lives of people living with dementia throughout the UK.

The team’s Empowering Better End of Life Dementia Care Programme (EMBED-Care) will develop new ways of supporting patients with advanced dementia, where they live and receive care.

Marie Curie provides core funding to the Marie Curie Palliative Care Research Department at UCL, which includes posts dedicated to improving the evidence base for palliative and end of life dementia care.

Determining a person’s palliative care needs, then initiating and delivering this care for patients with dementia, was one of the research gaps identified by the Palliative and end of life care Priority Setting Partnership with the James Lind Alliance.

According to Marie Curie, 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 £4.7 million investment is a huge step in the right direction to prioritising palliative and end of life care for people living with dementia.

With dementia now 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.

Previous research funded by Marie Curie reveals that, despite having complex needs, many people diagnosed with dementia often miss out on the care they need. This could result in patients dying with untreated symptoms and pain, and carers struggling with feelings of guilt and complex grief.

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.”

Marie Curie is a charity that 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.

It is the largest charitable funder of palliative and end of life care research. The charity invests nearly £3 million, each year, in research to help inform better quality of care.

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

The Cicely Saunders Institute is the world’s first purpose-built Institute for Palliative Care and Rehabilitation, named after Dame Cicely Saunders, who is recognised 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.

ESRC-NIHR 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.

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