Last Updated on March 27, 2026
Dementia UK has launched a new palliative and end of life care report, A better death: fixing palliative and end of life care for dementia. The charity warns that many people with dementia are not receiving timely, co-ordinated palliative care despite dementia being the leading cause of death in the UK. The report draws on new quantitative and qualitative research, alongside insights from clinical experts and people with lived experience of dementia.
It includes calls for action in three areas:
- Earlier planning and support.
- Better care at the end of life.
- Specialist support for every family.
According to the report, nearly half (46%) of families say that they were not told what to expect as a loved one living with dementia approached the end of their life, while 71% of current and former carers say they did not receive enough support.
The report was launched at a parliamentary even in Westminster where more than 80 MPs and parliamentary staff met with Dementia UK’s specialist dementia nurses, known as Admiral Nurses.
Attendees at the event were able to speak to people living with dementia and family carers to discuss how the health and care system can better support people living with dementia and their families as the condition progresses. They were also able to discuss failures with the current system with Dementia UK's Admiral Nurses. Attendees heard first-hand how these failures impact people living with dementia and people who have cared for someone living with dementia.
Reflecting on the event, Dr Hilda Hayo, Chief Admiral Nurse and Chief Executive Officer at Dementia UK, said, 'We're grateful that so many MPs joined us for this important event. Every day, people across the UK face the emotional, physical and practical realities of dementia. Yet too often they are left to navigate this journey alone.
'With the Government developing new national frameworks for both dementia and palliative care, there is a real opportunity to ensure people with dementia receive the co-ordinated, compassionate care they need at the end of life.
'This report reflects the clinical expertise of our Admiral Nurses and the honest experiences of people living with dementia in the UK today, and we hope these recommendations are taken on board during a period of significant reform for the health social care system.'
Dementia UK is calling on governments across the UK to ensure dementia is recognised as a life-limiting condition and that specialist dementia expertise is embedded with palliative and end of life care services.
Dementia UK argues that without reform, increased pressure will be placed on health and social care services by the increasing population of people living with dementia in the UK.
Commenting on the report, Katie Reade, Head of Policy and Public Affairs at Hospice UK, said, 'This timely report brings attention to the urgent need to improve end of life care for people with dementia – the leading cause of death in the UK.
'The upcoming Modern Service Framework must bring fundamental reform to the way end of life care is planned and funded in this country. The urgency cannot be overstated, with 6 in 10 hospices having made or considering cuts and significant inequality in access to care, including for people with dementia.
'The Modern Service Framework must recognise dementia as a life-limiting condition and ensure that everyone, no matter who they are and why they are ill, gets the palliative and end of life care they need.’
Stuart Andrew, Shadow Secretary of State for Health and Social Care, said, 'Too many families are being left to navigate the final stages of dementia without the support, guidance or specialist care they need.
'Dementia is a life-limiting condition, yet too often people are not given the information and support to plan ahead, leaving families unprepared at the most difficult time.
'This report from Dementia UK highlights the urgent need for earlier planning, better end of life care and great recognition of the challenges faced by people living with dementia and those who care for them.'
The full report from Dementia UK is available to read here.
In other news, the Local Government Social Care Ombudsman (LGSCO) has launched best practice guidance for care providers handling self-funder complaints.