DEAR DR. GOTT:
My 63-year-old daughter was a healthy, active woman until two years ago when she started having trouble with her speech. She couldn’t bring out the words she wanted to say and also could not remember things. She was later diagnosed with frontotemporal dementia (primary progressive aphasia). I was told this essentially means she cannot understand language.

Can you tell me what causes this? Is it terminal? Her doctors have said there is no cure or help they can offer her. It is very sad to see her struggle like this.

DEAR READER:
Frontotemporal dementia (FTD) is a blanket term for a group of rare disorders that affect the frontal and temporal portions of the brain. These areas are associated with personality, behavior and language. Disorders in the group include Pick’s disease, primary progressive aphasia and semantic dementia. There is currently a debate whether to include corticobasal degeneration and progressive supranuclear palsy. Should this happen, the name would likely be changed again to Pick Complex.

Currently there is no treatment that has been shown to slow FTD. Because the inability to control behavior and personality are the primary symptoms of most of the disorders that make up FTD, behavioral modification, anti-depressants and sedative/tranquilizers to control dangerous or unacceptable behaviors may be necessary. Your daughter has a subtype which causes impairment or loss of the ability to understand and perform speech and other linquistic abilities. Primary progressive aphasia, which your daughter has, affects not only spoken language but written language as well. Speech therapy may be an option.

Some of the subtypes of frontotemporal dementia appear to have a genetic component. Often, however, there is no family history. Researchers are still trying to uncover what causes these conditions but most involve a loss of nerve cells, shrinkage of the frontal and temporal lobes of the brain and deposits of damaged proteins inside nerves.

Unfortunately, at this time, FTD does appear to be a terminal affliction. Some suffers may live only two years and others up to 10. Eventually most will require 24-hour care and monitoring. Each case is different and the rate of deterioration varies.
I suggest you speak with your daughter’s physicians for their prognoses as they are most familiar with her specific case. They may be able to put you in contact with support groups and organizations that can help you prepare to care for her properly. It is important to make your daughter as comfortable as possible and that means knowing what may come next as her disorder progresses.

I recommend that you, and others interested in learning more about frontotemporal dementia, go online to learn more. Excellent information is available from the National Institute of Neurological Disorders and Stroke (www.nihds.nih.gov), the Association for Frontotemporal Dementias (www.FTD-Picks.org or 1-866-507-7222) and the Mayo Clinic (www.MayoClinic.com).

Because FTD is similar to Alzheimer’s disease, I am sending you a copy of my Health Report “Alzheimer’s Disease”. Other readers who would like a copy should send a self-addressed, stamped number 10 envelope and $2 to Newsletter, PO Box 167, Wickliffe, OH 44092. Be sure to mention the title.