King's College London

A survey for EMBED-Care, the UK’s largest ever dementia end-of-life care research programme led by King’s and University College London (UCL), found that only 42% of the British public are aware that dementia is a terminal illness.

In a representative sample of over 2,000 people, the poll conducted by YouGov showed 94% of the public did not know that dementia is the leading cause of death in the UK – despite the fact that 900,000 people are affected – and 93% did not know that the number of people dying with dementia is projected to more than double by 2040 in England and Wales, to 219,409.

Palliative care (care that aims to improve quality of life through addressing physical, psychosocial and family needs) can improve experiences and outcomes for people with dementia, for example by managing and treating common symptoms such as pain and agitation; symptoms that become increasingly common towards the end of life. Yet only half (51%) of Britons were found to understand that palliative care can benefit people who have dementia.

When it comes to what would be most important in the care of people with dementia, ‘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.

For many people with dementia, the majority of 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 Sleeman added: “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."

Professor Liz Sampson from UCL, co-chief investigator of the EMBED-Care programme and consultant liaison psychiatrist at the Royal London Hospital, said: “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.”

Dr Fiona Carragher, Director of Research and Influencing at Alzheimer’s Society, said: “Dementia is the UK’s biggest killer. People living with the condition deserve the right care to ease their distressing symptoms like pain and agitation at the end of their lives. Yet many cannot access good end-of-life care. This report confirms the shocking gap between what people expect of our health and social care system, and the devastating reality affecting thousands of families every year. Integrated care systems were launched this year, bringing local health and social care closer together. This gives us an opportunity to test new models of palliative care at scale settings to find out what really makes a difference to people with dementia. But it’s not enough; we need comprehensive workforce strategies for both the NHS and social care. The Government needs to invest now in the social care workforce, giving workers the support, respect and incentive to stay.”

Jane Ward, EMBED-Care Public and Patient Involvement group’s chair and former family carer, said: “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 to support people affected by dementia.”

EMBED-Care is a five-year programme of work funded by the UK Economic and Social Research Council and the National Institute of Health Research, which aims to develop new ways to improve end of life care for people dying with or from dementia and their carer. The programme is jointly run between the Cicely Saunders Institute at King’s, and the Marie Curie Palliative Care Research Department at UCL.

To view the full report from the YouGov poll, visit the EMBED-Care website here.