People living with dementia are routinely left without the support they need at the end of their life, according to new research from specialist nursing charity Dementia UK
Nearly half (46%) of families say 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 findings are published in Dementia UK’s new 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, coordinated palliative care despite dementia being the leading cause of death in the UK.
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 within palliative and end of life care services.
The report draws on new quantitative and qualitative research, alongside insights from Dementia UK’s specialist Admiral Nurses and people with lived experience of dementia. It includes clear calls for action across three areas:
- Earlier planning and support: Ensuring people with dementia receive meaningful advance care planning and guidance from the point of diagnosis
- Better care at the end of life: Improving workforce training so health and care professionals can better recognise and manage symptoms experienced by people with dementia, and ensuring families and carers can access education, respite and emotional support
- Specialist support for every family: Expanding access to specialist dementia nurses, such as Admiral Nurses, to provide continuity of care for families. As well as integrated health and social care records to ensure continuity of care throughout the system
Dementia UK is calling on governments across the UK to take urgent action and explicitly recognise dementia as a life-limiting condition and ensure specialist dementia expertise is embedded in new palliative and end of life care service frameworks. Without reform, the charity warns that increased pressure will be placed on health and social care services by the increasing population of people living with dementia in the UK.
Palliative care aims to improve quality of life for people with life-limiting illness by managing pain and other distressing symptoms, as well as addressing psychological, social and spiritual needs. End of life care is part of this approach, focusing on the final stages – typically the last year of life.
Dr Hilda Hayo, Dementia UK’s Chief Admiral Nurse and CEO said: “Living with dementia brings physical, emotional and practical challenges, and too many people are left to navigate this journey alone.
“This report reflects the clinical expertise of our Admiral Nurses and the honest experiences of people living with dementia in the UK today.
“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 coordinated, compassionate care they need at the end of life. We hope these recommendations are taken on board during a period of significant reform for the health and care system.”
Ruth Shafto, whose mum Linda lived with Alzheimer’s disease, describes the challenges and isolation she faced as a carer as her mum approached the end of her life: “As Mum’s dementia progressed, every day was a challenge.
“I phoned Dementia UK’s Helpline in desperation and was referred to the amazing Admiral Nurse Kerry. It was the first time in four years that we didn’t feel alone. Kerry told me that mum was on an end-of-life path. I thought, “what on earth is that?” I’d never heard it before.”
To read Dementia UK’s report, ‘A better death: fixing palliative and end of life care for dementia’ in full, visit https://www.dementiauk.org/
Support for the report
Stuart Andrew, Shadow Secretary of State for Health and Social Care has lent his support to the report’s launch and recommendations, saying:
“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 greater recognition of the challenges faced by people living with dementia and those who care for them.”
This report from Dementia UK highlights the urgent need for earlier planning, better end of life care and greater recognition of the challenges faced by people living with dementia and those who care for them.”
Katie Reade, Hospice UK’s Head of Policy and Public Affairs said:
“This timely report brings attention to the urgent need to improve end of life care for people living 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.”
New data on palliative and end of life care from the report
Of current carers and people living with dementia surveyed:
- Only 28% have been supported by a professional to plan for future health and care needs
- Only 26% reported that a professional explained to them the importance and benefits of an advance care plan (ACP)
Of people who cared for someone with dementia who has since died:
- 18% noted that the person with dementia did not have any legal or health planning measures in place
- Only 14% had an ACP in place
- 49% had a lasting power of attorney (LPA) in place
- Only 45% had a will in place
- 46% reported that health or social care professionals did not talk to them about what to expect when the person with dementia was approaching the end of their life
- 42% ranked access to specialist dementia nurses as being the most useful/beneficial resource for people with dementia at the end of their life
- 12% reported that they accessed a specialist dementia nurse during the end of life stage
Data taken from two surveys carried out by YouGov in 2025, see Appendix A (page 43) in the report for methodology.
General statistics on dementia and palliative care
- Dementia is the leading cause of death in the UK
- It is estimated that one million people in the UK are living with dementia
- Up to one in four hospital beds in the UK is occupied by a person with dementia, and over a quarter of people with dementia die in hospital
- Over 90,000 people die with dementia every year
- The number of people with dementia who will require palliative care is projected to double by 2040
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About Dementia UK
Dementia UK is the specialist dementia nursing charity that is there for the whole family. Our nurses, known as Admiral Nurses, provide free, specialist advice, support and understanding to anyone affected by dementia, whenever it’s needed. With the support of an Admiral Nurse and Dementia UK – whether it’s on our Helpline, through our Clinics service, or in the community – families we support know they’re not alone.
If you need advice or support on living with dementia, contact Dementia UK’s Admiral Nurse Dementia Helpline on 0800 888 6678 or email helpline@dementiauk.org. The Helpline is staffed by experienced Admiral Nurses. You can also book a free video or phone appointment to get expert dementia support from an Admiral Nurse. Find out more atdementiauk.org/book-an-
For more information visit www.dementiauk.org, follow Dementia UK on Twitter: @DementiaUK, and on Facebook: www.facebook.com/DementiaUK
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