Public awareness about dementia’s impact on society is “poor”, research suggests

Public awareness about dementia’s far-reaching impact on society is “poor”, according to a new survey of more than 2,000 people.

The survey, conducted by YouGov for EMBED-Care, reveals that 94% of the general public do not know that dementia is the leading cause of death in the UK; this is despite the condition affecting over 900,000 people.

Vast majority of respondents believe care costs are covered by charities

The survey also revealed that the general public are not aware of the impact dementia can have on a family. Only 17% knew that the majority of care costs are covered by families themselves, with 58% mistakenly believing that care is mostly funded by charities.

Similarly, just half (51%) of the respondents were found to understand that palliative care can benefit people who have dementia (this includes through managing and treating common symptoms such as pain and agitation).

The authors of the research say the findings demonstrate that many families who are (or will be) affected by dementia may not be prepared for the far-reaching impacts of the condition.

Professor Katherine Sleeman (King’s College London), co-investigator on the EMBED-Care programme, said: “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.”

“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,” she added.

A “shocking gap” between expectations and reality

Professor Liz Sampson (Marie Curie Palliative Care Research Department, UCL), co-chief investigator of the EMBED-Care programme and consultant liaison psychiatrist at the Royal London Hospital, is now urging the government to implement the changes needed to meet the needs of the increasing number of people 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,” she said.

Dr Fiona Carragher, Director of Research and Influencing at Alzheimer’s Society, said the 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.”

She added that with the launch of new integrated care systems, there will be 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,” she concludes.