Frontotemporal Degeneration (FTD) is a disease process that results in progressive damage to cells in areas of the brain called the frontal and temporal lobes.  Although rare, FTD is actually the most common cause of dementia for people under 60.

FTD typically affects people in their 40s and 50s, when few expect dementia, but can have later onset. Distinct from Alzheimer’s, it causes dramatic changes in behaviour, personality, and/or language and movement   Memory is typically relatively preserved in FTD – at least at first.

Today, far too few people—including health professionals—know about FTD.  It is often initially misdiagnosed as a psychiatric problem, a movement disorder such as Parkinson’s disease, or Alzheimer’s. As a result, many families endure a long journey to an accurate diagnosis – nearly four years, on average.

As FTD progresses, it becomes increasingly difficult for people to plan or organise activities, behave appropriately in social or work settings, interact with others, and care for oneself, resulting in increasing dependency on caregivers. There are currently no treatments to slow or stop its progression.