The largest ever research grant to improve palliative and end of life care for people with dementia and their carers in the UK (£3.7m) has been awarded to researchers at the Marie Curie Palliative Care Research Department, UCL, and the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, Kings College London.
The 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 ESRC-NIHR Dementia Research Initiative 2018, which aims to improve the lives of people living with dementia across 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. The terminal illness charity, Marie Curie, provides core funding to the Marie Curie Palliative Care Research Department, 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.
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 £3.7m 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 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”.
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”.
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.”