The Disease Impact Survey was designed to characterize person-centric perceptions of FTD disease manifestation and the impact to those diagnosed and others.

Respondents were 19.5% FTD-diagnosed persons, 40% biological family, 40% spouse/partner caregivers. Diagnosis was 54% bvFTD, 6% nfvPPA, 7% svPPA, 4% lvPPA, 9% PSP, 7% CBD/CBS, 4% FTD-ALS, 2% other, 6% indeterminate. The most common first symptoms were personality change (27%), cognitive problem (25%), language problem (18%). 78% of individuals waited for a second symptom before seeking a diagnosis. 52% required seeing 3 or more doctors before receiving an FTD diagnosis. 75% of FTD diagnosed persons were reported to be living at home. Assistance required with daily activities ranged from 30% for self-reporting FTD persons to 43% as reported by biological family/spouse/caregivers. Family and caregivers reported a range of negative impacts including altered role/relationships (84%), disrupted plans for the future (73%), increased stress/negative health (73%).

FTD is a devastating disease that hinders a person from performing basic mental and/or physical daily tasks and often changes their personality and behaviors. The Disease Impact Survey captures the lived experience and demonstrates that FTD not only affects the person diagnosed, but also family, friends, and caregivers.