Dr. Gott: Rare dementia has no cure
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 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.
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, antidepressants and sedative/tranquilizers to control dangerous or unacceptable behaviors may be necessary. Your daughter has a subtype that causes impairment or loss of the ability to understand and perform speech and other linquistic tasks. Primary progressive aphasia, which your daughter has, affects not only spoken language but written language, as well. Speech therapy may be an option.
Unfortunately, at this time, FTD does appear to be a terminal affliction. Some sufferers may live only two years and others up to 10. Eventually, most will require 24-hour care and monitoring.
I suggest you speak with your daughter’s physicians. They may be able to put you in contact with organizations that can help you prepare to care for her properly.
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.ninds.nih.gov), the Association for Frontotemporal Dementias (www.FTD-Picks.org or 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 No. 10 envelope and $2 to Newsletter, PO Box 167, Wickliffe, OH 44092. Be sure to mention the title.
Dr. Gott is a retired physician and the author.