How Much Does the United Kingdom Public Know about Dementia and the Role of Palliative and End-of-Life Care? A Representative Public Opinion Poll (Sampson, 2023)

Yorganci E., Kenten C., Evans C., Sampson E.L., Tunnard I., Ellis-Smith C., Kupeli N., Duffy B., Sisk A.-R., Davies N., Sleeman K.E. 

Palliative Medicine 2023;37(1 Supplement): 37. 

Available online at this link 

Background/aims: The number of people dying with dementia is increasing. Although dementia is the leading cause of death in the United Kingdom (UK), public knowledge and perceptions around dementia, including care towards the end of life, are unknown. Our aim was to gain an insight into public knowledge and perceptions around dementia, and the role of palliative and end-of-life care. 

Method(s): An online public opinion poll, sampling UK adults aged 18+, was conducted in collaboration with YouGov in April 2022. The poll included 11 sociodemographic (e.g., age, gender, region) questions and 11 questions about current and future levels of need, research and care funding, charity awareness, palliative care for dementia, and priorities for dementia care. Questions were developed with input from an opinion poll expert and informed by previous polls. Results were weighted to be representative of all UK adults. 

Result(s): 2133 adults received and completed the opinion poll. Only 6% of the public correctly identified dementia as the leading cause of death (38% heart disease), and only 7% correctly identified that dementia deaths will more than double by 2040. Fewer than half (42%) were aware that dementia is a terminal illness and 51% believed that people with dementia can benefit from palliative care. 17% of the public were aware that most dementia care in the UK is paid for by people with dementia and their families. The top two public priorities for dementia care were 'involving the person with dementia and their families in care and treatment decisions', and 'good management and treatment of symptoms and providing comfort'. 

Conclusion(s): We identified major gaps in public knowledge and understanding of dementia, and the role of palliative and end-of-life care. There is an urgent need to educate the public about dementia, demystify the care experience, equip audiences with knowledge of services that could support them, and create advocates demanding high quality care.