The first International Conference on Frontotemporal Dementias (ICFTD) was held in Lund, Sweden in 1986 to draw attention to FTD as a newly recognized form of non-Alzheimer’s dementia. Three subsequent meetings were hosted by the Lund group at irregular intervals. In 2006, the conference took on its current form; a three-day scientific meeting combined with a one-day caregiver session, held every two years, with the site alternating between Europe and North America. Until recently, the choice location and timing of the meeting was informal, relying on a prominent individual or group within the field to volunteer to host, organize and take on the financial responsibility.

In 2011, the International Society for Frontotemporal Dementias (ISFTD) was founded as the major society of FTD scientists, with one of its central mandates being to ensure the future of the conference. Although it is anticipated that the ISFTD may eventually take on a central role in actually running and funding the meeting, at the present time, the society only directs the selection process and offers the support and advice of its membership. The ICFTD attracts a diverse audience that includes clinicians, neurologists, neuropsychologists, psychiatrists, neuroradiologists, neuroscientists, molecular geneticists, neuropathologists, neurobiologists, pharmacologists, and their trainees, as well as representatives from biomedical and pharmaceutical industries, government agencies, patient advocacy groups, patients, their families, caregivers, and interested laypersons.

The ICFTD is now well recognized as the primary venue for the synthesis, exchange, and dissemination of research evidence related to FTD, where experts from diverse backgrounds share recent discoveries, insights, and opinions. This allows novel hypotheses to be generated, research collaborations to be established, consensuses to be developed, training opportunities to be explored, and knowledge to be translated across disciplines. The caregiver session provides a unique opportunity for new scientific knowledge to be shared directly with stakeholders (patients, families, caregivers, community organizations, and health care policy makers) and, of equal importance, allows these stakeholders a rare opportunity to provide direct feedback to the medical and scientific community. By holding the caregiver session concurrently at the same venue as the scientific conference, the public is able to interact directly with the experts and become engaged in the process of knowledge translation.