In a representative sample of over 2,000 people, 94% of the public did not know that dementia is the leading cause of death in the UK, and 93% did not know that the number of people dying with dementia is projected to more than double by 2040.

Palliative care can improve experiences and outcomes for people with dementia. Yet only half (51%) of Britons were aware of this.

When it comes to what people want from dementia care, ‘involving the person with dementia and their families in care and treatment decisions’ (57%) and ‘good management and treatment of symptoms and providing comfort’ (53%) were at the top of the public’s list.

Most of dementia care costs are covered by families. However, only 17% of the public said they are aware of this, and 58% incorrectly believe that dementia care is mostly funded by charities.

Professor Katherine Sleeman from King’s College London, a co-investigator on the EMBED-Care programme, and a member of the ARC's palliative and end of life care research team, said: “This new data shows public awareness about dementia’s impact in society is poor, and families affected by dementia may not be prepared for costs they may incur. High-quality care is valued by the public but there are gaps in provision and not everyone gets the care they need.” 

Despite ongoing efforts to find a cure, people continue to die with and from dementia and it is imperative that evidence-based, high-quality palliative and end-of-life care is accessible to everyone who is affected, regardless of their wealth. The EMBED-Care programme will provide the essential data needed to improve care for dementia patients as they near the end of life

Professor Katherine Sleeman, King’s College London, co-investigator EMBED-Care programme and honorary consultant at King’s College Hospital NHS Foundation Trust

It is concerning that public awareness that dementia is a terminal condition is so low, and that so few people realise they should have access to palliative care. Dementia is already the leading cause of death and numbers will continue to increase. We need to ensure that we have the number of palliative care staff required to support these increasing numbers and that they are sufficiently well-trained to provide the specialist care required

Jane Ward

Jane Ward, EMBED-Care Public and Patient Involvement group’s chair and former family carer

Urgent and far-reaching changes to the health and social care system are needed to meet the needs of increasing numbers of people living with dementia. In the UK, more than 900,000 people are living with dementia. A priority for action must be to ensure that people with dementia and their families receive the care they need. All Integrated Care Boards must consider dementia care needs, including palliative care

Professor Liz Sampson from University College London (UCL), co-chief investigator of the EMBED-Care programme and consultant liaison psychiatrist at the Royal London Hospital

About the EMBED-Care programme

The Empowering Better End of Life Dementia Care (EMBED-Care) programme brings together clinicians, researchers, policymakers, patients and families. It aims to develop new ways to improve end of life care for people dying with or from dementia and their carer. 

Background to the programme

  • Dementia is the commonest cause of death in the UK
  • By 2040, it is estimated that each year 220,000 people will die with dementia, with many experiencing distressing symptoms 
  • Access to good care for people with dementia towards end of life is highly unequal
  • In the UK, policymakers and commissioners do not have sufficient information to deliver solutions to improve care that focuses on the person and their needs or to plan future services

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