What the report recommends
Dementia UK is calling for urgent action across three key areas to improve dementia end of life care:
- Earlier planning and support
- Ensure people with dementia receive meaningful advance care planning from diagnosis
- Provide clear guidance on future health and care decisions
- Better care at the end of life
- Specialist support for every family
- Expand access to specialist dementia nurses, such as Admiral Nurses, to provide continuity of care for families
- Improve integrated health and social care records to ensure continuity of care throughout the system
Why dementia must be recognised as a life-limiting condition
Dementia UK warns that without reform, increasing pressure will be placed on health and social care services as the number of people living with dementia grows.
Palliative care aims to improve quality of life for people with life-limiting illness by managing pain and other symptoms, alongside psychological, social and spiritual support. End of life care forms part of this approach, focusing on the final stages – typically the last year of life.
Recognising dementia as a life-limiting condition is essential to ensuring people receive appropriate and timely palliative care.
Real-life experience of dementia care at the end of life
Ruth Shafto, whose mum Linda lived with Alzheimer’s disease, described the challenges she faced:
“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.”
Key findings on dementia and end of life care
- Planning and support
- Only 28% were supported by a professional to plan future care
- Only 26% had advance care planning explained to them
- End of life care experience
- 46% were not told what to expect at end of life
- Only 12% accessed a specialist dementia nurse
- 42% said access to specialist dementia nurses would be most beneficial
- Legal and care planning
- Only 14% had an advance care plan in place
- 49% had a lasting power of attorney
- Only 45% had a will in place
Data is based on two YouGov surveys conducted in 2025.
Wider statistics on dementia in the UK
- Dementia is the leading cause of death in the UK
- Around one million people are living with dementia
- Up to one in four hospital beds are occupied by someone with dementia
- Over 90,000 people die with dementia each year
- The number requiring palliative care is projected to double by 2040
For more information contact Tom Davis, Head of Communications at Dementia UK on tom.davis@dementiauk.org
Out of hours please call press office on 020 8036 5383 or email media@dementiauk.org
