Nurse-led dementia research team receives £4.7m to examine end of life care services

Joint lead of study says aim is to enhance person-centred care of people with dementia

Joint lead of study says aim is to enhance person-centred care of people with dementia

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The ‘largest ever’ research grant of its kind to improve palliative and end of life care for people with dementia has been awarded to a nurse-led team of researchers.

The £4.7 million funding will go to academics at the Marie Curie Palliative Care Research Department at University College London (UCL), and the Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation at King’s College London.

Lack of support

The research project follows the publication of a study by charity Marie Curie in 2017, which found that people with dementia receive little specialist end of life support, with patients increasingly relying on emergency care as they near death. 

The study, which began earlier this month, is one of four collaborative projects being funded by the Dementia Research Initiative 2018, run by the Economic and Social Research Council and the National Institute for Health Research, which aims to improve the lives of people living with dementia in the UK.  

Moving between settings

Catherine Evans, clinical academic in palliative care at the Cicely Saunders Institute, is jointly leading the research.

She said the study is due to run for five years and will begin by assessing people’s transition between settings, such as moving from hospitals to nursing homes.

‘We want to know what happens during transition to understand how individuals with dementia are moving through our system, what’s working well and what can be improved,’ she said.

‘As a society we want to cure dementia, but we have increasing numbers of people dying with dementia and sometimes their care can be found wanting.’

Wider scope of study

Dr Evans added that the experience of people who have early onset dementia will also be studied through work with UCL’s Queen Square Institute of Neurology, which has a register of all patients in England who have received a diagnosis of early onset dementia.

‘The intention of our research is about enhancing the provision of person-centred care,’ she said. 

‘Older people are often living with other conditions along with dementia. It is more complicated than focusing on a single disease; it’s about tailoring care to meet those other needs too.’

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