My husband has frontotemporal dementia (FTD). The disease took a number of years to diagnose. He was misdiagnosed as bipolar for many years and consequently treated with inappropriate antipsychotic drugs while the dementia progressed. He was in and out of the hospital 10 times and did two three-month stints in two different nursing homes. Luckily we were able to get a diagnosis by working with a wonderful neurologist and psychoneurologist.
FTD is on the National Institutes of Health's list of rare diseases and is fast tracked by Social Security for Disability. It is not like Alzheimer's—it strikes people at a much earlier age and has a shorter life span. It affects the frontal lobes, which control executive reasoning and cognitive function. Most patients afflicted with FTD lose their speech and ability to walk but not their memories. There are no drugs specifically designed for this orphan disease.
I want to share two Web sites to help others dealing with this disease. The first is for general information and caregiver advice: ftdsupport.com. The second is a support forum for family caregivers: ftdsupportforum.com.