11 -- What Is FTD and What Do We Know -- World FTD Marathon Europe

This portion of the World FTD Marathon was presented by Dr. Yolande Pijnenburg, neurologist and chair of the FTD Expertgroep at VU University Medical Center Amsterdam.

Frontotemporal degeneration (FTD) is the most common dementia for people under 60. Unlike Alzheimer's disease, FTD primary affects a person's behavior, personality, language and movement, rather than memory. Currently there are no treatments and no cure.

The World FTD Marathon (Oct. 3, 2020) was a first-of-its-kind, day-long event devoted entirely to spreading FTD awareness and information across the globe. Developed by World FTD United, an international coalition of FTD-focused organizations, the Marathon featured participants from Australia, Europe and North, Central and South Americas.

[MrTtheCat]

This was fantastic, thank u. I would like to (respectfully) strongly disagree on 1 aspect... in actuality MANY of us higher functioning/higher “cognitive reserve/highly educated... HAVE in fact been bringing up concerns to Drs... but especially when under 60 (let alone under 50!!!) we as well as the Drs assume that the issues we r reporting r related to anxiety or depression or stress or fatigue in general... this is very IMPORTANT for Drs to understand... as this is skewing the clinical diagnostic criteria... YES I have been very aware that I’ve dramatically changed... just most often not in the moment... but if asked targeted questions... Drs could have easily noted the dramatic changes in me. And not everyone has a spouse or family to bring them into the Dr... & most importantly what the “Caregiver” describes as going on, & what we the FTDer would describe as actually happening... is often very different... so this again is skewing the data. It is critical that researchers start interviewing FTDers very early... not just caregivers... we in fact could give critical missing pieces of info. I’m age 48, diagnosed age 45. Using all my prior education to use nutrition & lifestyle (physical & mental exercises) to slow down my FTD progression... successfully. What is commonly called “Apathy” is experienced more as a “Laisse Faire” attitude in us... it’s like I see the house is burning down around me... & my reaction is “meh.” Very very bizarre for someone like me who’s had high Self Efficacy all my life. Thank u for everyone’s efforts.