Alzheimer’s Society and Marie Curie announce new million-pound partnership to transform end-of-life care

Monday, 14 July 2025 00:01

Today (Monday 14 July), two of the UK's leading health charities, Marie Curie and Alzheimer's Society, have announced five new research projects as part of a million-pound partnership to improve end-of-life care for people with dementia and their carers. Dementia is a terminal condition and the UK's biggest killer. Yet significant gaps in both evidence and service provision mean that people dying with dementia often receive end-of-life care that fails to address their unique...Request free trial

Dementia is a terminal condition and the UK's biggest killer. Yet significant gaps in both evidence and service provision mean that people dying with dementia often receive end-of-life care that fails to address their unique and complex needs.

People living with dementia can often face barriers to accessing high-quality end of life care. According to Marie Curie just 25% of people with dementia receive specialist palliative support, compared to over 80% of those with cancer. Care is often fragmented, poorly coordinated, and falls short of what people with dementia need.

To address these gaps in end-of-life care, Alzheimer's Society and Marie Curie are funding five new pioneering research projects which will develop practical tools, training, and guidelines to improve homecare support, empower carers and cut unnecessary hospital admissions.

The projects will be overseen by leading dementia researchers and academics from University College of London, Kings College London and the University of Strathclyde.

Dr Richard Oakley, Associate Director of Research and Innovation at Alzheimer's Society, said: “Dementia is the UK's biggest killer - yet when people with dementia reach their end of the life the care they receive falls short of meeting their individual and complex needs.

“Too often, the distressing reality for people with dementia is they face unmanaged pain, agitation, and breathlessness, and die in places they never would have chosen, typically hospitals or care homes.

“We are proud to partner with Marie Curie on this research and combine our unique expertise in dementia and end-of-life care. Our goal and shared commitment is to transform the quality of care and provide people with dementia and their loved ones with dignity, compassion, and tailored support at the end of life."

Lesley Baldrian, Marie Curie Senior Nurse, said: “I'm incredibly proud of the care and support we offer for people living with a late-stage dementia diagnosis here at the Marie Curie Dementia Care and Respite Service in West Glamorgan.

“Sadly, however, we know huge gaps remain, not only in the provision of specialist palliative care for people with dementia but in the understanding of the complex needs of end of life dementia care.

“Increasing the amount of research, support, respite and end of life care could be transformative for patients and their families. There is only one chance to get end of life care right.”

Stuart Jennings, 67, who is a Vice President of Alzheimer's Society and whose wife, Carol, died aged 70 from Alzheimer's disease and played a pivotal role in dementia research for decades, said: “Carol and I were married for almost 50 years, and I was her carer for 12 – it was one of the greatest privileges of my life. Carol was warm, headstrong and confident.

“We know exactly what good end-of-life care should entail, having had brilliant support from a range of carers, nurses and family members, but sadly, we know this is not a universal experience for many people living with dementia.

“Getting good end-of-life care and support should not be a postcode lottery. It should be universal. We all have a right to spend our final moments in a place of our choosing, free of pain, with our needs and conditions fully understood.

“I welcome this new research focusing on end-of-life care for people with dementia. I hope more people will be able access the quality of care and support we did at the end.”

The projects are due to start later this year.

For support and information on end-of-life and dementia, visit mariecurie.org.uk or alzheimers.org.uk.

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Notes to editors: 

[1] Marie Curie's 2024 Public Attitudes towards Death, Dying and Bereavement (PADD) survey can be accessed here.

[2] The five funded projects are:

Supporting homecare workers to provide better end of life care for people living with dementia

Dr Lesley Williamson | King's College London

Around 90,000 people with dementia in England are supported by homecare workers, yet many of these staff lack training in end-of-life care. Dr Williamson's study will pilot the use of the IPOS-Dem tool, designed to help carers identify symptoms, assess needs, and communicate with healthcare professionals. The project will train homecare workers to use the tool over 12 weeks, then evaluate its effectiveness and practicality. Findings will be shared widely to promote better support for homecare staff and more consistent, person-centred end-of-life care for people with dementia.

DLI-dem: A New Tool to support dementia carers during the end-of-life care

Dr Nicola White | University College London

Caring for someone with dementia near the end of life can be overwhelming. This project aims to improve death literacy—the knowledge, confidence, and skills needed to navigate end-of-life care. Dr White will adapt the existing Death Literacy Index into a version tailored for dementia carers (DLI-dem). The tool will be developed through interviews with carers and dementia nurses, tested via a national survey, and trialled in practice. The goal is to better support carers and improve the end-of-life experience for people with dementia.

Understanding how to deliver better end of life care in the community for people living with dementia

Dr Therese Johansson | Kings College London

Hospital admissions in the final months of life can be distressing for people with dementia, yet they remain common. Dr Johansson will analyse national survey data from bereaved families to explore how use of primary and community care services—like GPs and home-based palliative care—affects hospitalisation rates. By identifying what helps people stay out of hospital, this research will inform policies and improve community-based end-of-life care for people with dementia.

Using a monitoring app to improve dementia care at home near end of life

Professor Roma Maguire | University of Strathclyde

Caring for someone with dementia near the end of life is challenging, and current support systems often fall short. Professor Maguire's study will adapt CARE-PAC, a digital tool that enables people with dementia and their carers to log symptoms and wellbeing, triggering alerts for healthcare teams. The project will co-design a dementia-specific version of the tool and test it with families and care providers over 12 weeks. The goal is to improve symptom management, prevent crises, and enhance coordinated care at the end of life.

Understanding and supporting palliative care needs in rare dementias

Professor Sebastian Crutch | University College London

People with rare dementias, like frontotemporal dementia or young-onset Alzheimer's, often have unique end-of-life care needs that are poorly understood. Professor Crutch's study will analyse national healthcare data and gather insights from over 200 people with lived experience to explore how and when palliative care is accessed. The project will also develop training tools and guidelines to support earlier, more meaningful conversations about end-of-life care. The aim is to improve access, timing, and quality of palliative support for people with rare dementias and their carers.