The Marie Curie Palliative Care Research Department at University College London, and the Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation at Kings College London, have been awarded £3.7m for the project.
“The work will transform the provision of palliative dementia care for people today and in the future”
It is the largest ever research grant given to improve palliative and end-of-life care for people with dementia.
Those behind the Empowering Better End of Life Dementia Care Programme (EMBED-Care) say there has never been a more important time to embark on such a scheme, as dementia is now the most common cause of death in the UK. By 2040, 220,000 people will die with dementia each year.
The study is one of four to receive a grant through the ESRC-NIHR Dementia Research Initiative 2018 – a partnership between the Economic and Social Research Council and the National Institute of Health Research to support innovation in dementia prevention, interventions and care delivery.
In their mission statement, the EMBED-Care researchers claimed that access to good care for people with dementia towards the end of life was “highly unequal”.
The team will follow people with advanced dementia and their carers for nine months to find out their experiences of services and what really matters to them. The study will involve “neglected groups”, such as those with young onset and rapidly progressive dementias.
The information will be used to develop new ways of supporting patients to enable them to maintain the best possible quality of life without unnecessary pain or suffering right until their death – whether they are at home, in hospital or in a care home.
“We have to find better ways to deliver person-centred care that will improve comfort and quality of life”
Describing what the new model palliative of care will look like, the researchers said: “The intervention will empower staff and carers to assess and monitor needs and concerns, and support decision making to manage distressing symptoms by providing the right care.
“It will maximise comfort and bridge moves between settings, providing seamless care,” they said. “It is person-centered and tailored to individual goals of care. We will develop training packages for staff, and work with a technology company to enable remote monitoring.”
The researchers will develop a training package for staff. They added: “We will generate a step-change in how care is provided for people with dementia.”
Dr Catherine Evans, clinical academic in palliative care at the Cicely Saunders Institute, Faculty of Nursing, Midwifery and Palliative Care, King’s College London, said: “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,” she said.
Dr Liz Sampson, a clinical academic in dementia care at the Marie Curie Palliative Care Research Department, UCL, said it was a “hugely under-researched area”.
She added: “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.”