Rarer dementia subtypes – what does the general public know? A survey across five European language groups

Background There is a lack of understanding about dementia in the general population. However, dementia comprises of various different subtypes, with different symptom profiles. To date, it is unclear how much the general public knows about rarer dementia subtypes, including frontotemporal and Lewy Body dementia and primary progressive aphasia. Therefore, the aim of this five-country survey was to explore the knowledge of the general public about different dementia subtypes in Germany, Lithuania, the Netherlands, Poland, and the United Kingdom. Methods An online survey was developed with researchers from the UK, Germany, and Lithuania. The survey was then also adapted to Poland and the Netherlands. The survey was shared via multiple networks in each country, including social media. German, English, Dutch, Polish, and Lithuanian speakers across Europe were able to complete the survey. Data were analysed using multivariate logistic regressions in R. Findings Whilst over 1000 participants provided data, a total of 681 people aged 18 + speaking English ( n = 202), Lithuanian ( n = 143), German ( n = 141), Polish ( n = 118), or Dutch ( n = 77) fully completed the survey between May 2025 and April 2026. Awareness of dementia subtypes and related knowledge varied by language of response, with Dutch, German, Lithuanian, and Polish participants showing lower awareness of dementia subtypes, being more likely to select a non-Alzheimer’s dementia subtype as the most common, and less likely to endorse that different dementia subtypes have distinct symptoms compared with English participants. Interpretation This is the first international comparative evidence on general public’s awareness of rarer dementia subtypes. Findings can be used to develop targeted awareness campaigns in and across different countries, as greater knowledge about rarer dementias can help improve diagnosis rates and plan better care.