FTD – frontotemporal degeneration – is a disease that results from progressive damage to the temporal and/or frontal lobes of the brain. It can also be referred to as frontotemporal dementia, frontotemporal lobar degeneration (FTLD), or Picks disease.
FTD is separated from other types of dementia in two important ways:
With FTD, you’ll notice a gradual, progressive decline in behavior and/or language, yet memory usually stays relatively intact. As the disease progresses, you’ll find it difficult for the person to plan and organize, behave appropriately in social settings, interact with others, even personal care can be difficult.
FTD usually impacts at a younger age, with 60 percent of all cases affecting 45 to 64 year olds. FTD can impact both work and family in ways that other forms of dementias do not.
Like other forms of dementia, there are currently no treatments available to slow or stop the progression of the disease.
When first diagnosed, it’s important to start building your team for long term management of the issues you’ll be facing in the coming years.
Start by finding a doctor who is knowledgeable about FTD and the varied approaches to treatment. You want someone well versed in dealing with FTD, not someone who is new to the cause.
Start learning about other resources and build your team of specialists. Find speech and language pathologists, occupational therapists, physical therapists, neuropsychologists, in home care, social workers, and even holistic specialists. Don’t be afraid to try new things to help the both of you.
FTD in itself is not life-threatening. FTD is marked by the inevitable deterioration in functioning, with the average mean course of 7 to 13 years once the first symptoms have been diagnosed. Complications from the disease usually materialize as infections, pneumonia, or injury from falls.
As a caregiver, it’s especially important to connect with people in similar circumstances. They can provide resources and support at a time when you need it most. The Association for Frontotemporal Degeneration is a good place to start.