The need for better dementia literacy: current public understanding and awareness of dementia symptoms, risk factors and subtypes

Abstract Background Improving public knowledge of modifiable risk factors and presenting symptoms of dementia is vital to aid early diagnosis and treatment. Unfortunately studies across the world report low levels of public awareness, even for the most common type of dementia: Alzheimer’s disease. While many people associate dementia with memory loss, little attention has been given to measuring public knowledge of key symptoms in atypical or non‐Alzheimer’s dementia subtypes. This study aimed to determine public understanding of different forms of dementia and accuracy in knowledge regarding key symptoms and risk factors. Method A 10‐minute face‐to‐face survey of 311 adults (58% women), aged 18 to 89 years, was conducted in Exeter, UK in 2018. The majority (93%) of participants were White/European and well‐educated. A third had some experience caring for a person with dementia. Participants were asked to define dementia, name as many subtypes as possible, indicate which of the main dementia types they had heard of, and answer knowledge questions regarding dementia symptoms, risk factors and treatment options in both Alzheimer’s and frontotemporal dementias. Result Although two‐thirds of participants (68%) could state at least one key fact about dementia (usually memory loss), only 11% identified dementia as a neurological or brain disease that was degenerative. Almost all participants had heard of Alzheimer’s disease (98%), although only 43% spontaneously named this type. While 57% said they had heard of Vascular dementia, less than a quarter had ever heard of Fronotemporal dementia (23%) or Dementia with Lewy Bodies (17%). Accuracy of dementia knowledge was generally low, but greater for Alzheimer’s Disease (57% accuracy across questions) than for Frontotemporal dementia (27% accuracy across questions). Knowledge was poorest regarding risk factors. Having personally known or cared for someone with dementia and having higher education levels was associated with greater knowledge in Alzheimer’s Disease (all p < .05). Conclusion Overall, public knowledge of dementia remains suboptimal, but particularly so for non‐Alzheimer dementias. Improving public awareness of non‐memory symptoms and how to reduce risk of dementia will be an important step for future management of dementia.