On 14 October, the members of the PREDICTFTD Public Involvement Board (PREDICTFTD-PIB) gathered online for a consultation on the topic of stigma and public awareness about Frontotemporal Dementia (FTD). The PREDICTFTD-PIB includes people living with FTD as well as individuals who are caring for, or have cared for people with FTD, offering valuable lived experience insights to the PREDICTFTD project. This consultation was attended and facilitated by Soraya Moradi-Bachiller, Public Involvement Officer at Alzheimer Europe (AE) and Angela Bradshaw, Director for Research at AE. The PREDICTFTD project was launched in December 2024, funded by the EU’s Horizon Europe programme for a period of 4.5 years.
The project, which includes partners from 8 countries, is developing biomarkers and tools to advance the diagnosis of FTD, aiming to reduce the time it takes to obtain an accurate, biological diagnosis of the condition. Alzheimer Europe is developing a public awareness strategy to help inform the public, policymakers and other stakeholders about the project, and about FTD. The 14 October consultation was designed to obtain input from people with lived experience of FTD, to understand public attitudes to FTD. During the consultation, members of the Public Involvement Board spoke about their experiences of stigma, explaining how there are many misconceptions about FTD. They shared insights about how they have dealt with these misconceptions in their daily lives, and the importance of informing people about FTD. Learn more about PREDICTFTD: https://www.predictftd.eu/