March 10, 2023 | The recent news about the worsening condition of actor Bruce Willis has brought new attention to the disorder known as frontotemporal dementia. Frontotemporal dementia, or FTD, is a rare form of dementia that is similar to Alzheimer disease, except that it tends to affect only certain areas of the brain. FTD is rare is and tends to occur at a younger age than other dementias. It can occur in people as young as 20. But it usually begins between the ages of 40 and 60. The average age at which it begins is 54. FTD is progressive, meaning symptoms get worse over time. It’s estimated that close to 60,000 people in the United States have FTD. Some people live more than 10 years after a diagnosis, while others live less than two years after they are diagnosed. Like those with Alzheimer’s, people with FTD have speech issues but have trouble being understood and also struggle to find words versus trouble with remembering or recalling some words.

March 10, 2023 | Frontotemporal dementia, also known as FTD, is the result of damage to neurons in the frontal and temporal lobes of the brain. There are several disorders that can result in frontotemporal dementia, all of which can affect middle-aged and older adults. Behavioral variant frontotemporal dementia, or bvFTD, is the most common frontotemporal disorder. It causes changes in personality, behavior, emotions, and judgment. The underlying causes of frontotemporal dementia are not yet fully understood. People with FTD have abnormal amounts or forms of proteins called tau and TDP-43 inside nerve cells, or neurons, in their brain. The neurons die because the buildup of these proteins causes damage. In some cases, mutations or changes in genes can be identified as the cause of FTD. For example, about 10 to 30 percent of bvFTD cases can be attributed to genetic causes. People with a family history of FTD are more likely to have a genetic form of the disease.

March 10, 2023 | The most common signs of frontotemporal dementia involve extreme changes in behavior and personality. These may include increasingly inappropriate social behavior, a loss of empathy and other interpersonal skills, such as having sensitivity to another’s feelings, and a lack of interest or apathy, which can be mistaken for depression. People with FTD may exhibit repetitive compulsive behavior, such as tapping, clapping or smacking lips. Changes in eating habits, usually overeating or developing a preference for sweets and carbohydrates, eating inedible objects and compulsively wanting to put things in the mouth are all possible signs of FTD. Other problems associated with the disorder include difficulty in understanding written or spoken language, no longer knowing word meanings, making mistakes in sentence construction and trouble naming things, such as replacing a specific word with a more general word such as “it” for pen.

March 10, 2023 | There is no specific test for frontotemporal dementia. A physician may look for signs and symptoms of the disease and try to exclude other possible causes. The disorder can be especially challenging to diagnose early because the symptoms of FTD often overlap with those of other conditions. If you also have symptoms such as loud snoring and pauses in breathing while sleeping, your doctor may have you undergo a sleep study to rule out obstructive sleep apnea. Sometimes doctors extensively test your reasoning and memory skills. This type of testing is especially helpful in determining the type of dementia at an early stage. The pattern of testing abnormality may help distinguish frontotemporal dementia from other causes of dementia. An MRI or PET scan of the brain may allow your physician to pinpoint any visible conditions, such as clots, bleeding or tumors, that may be causing your symptoms.

March 10, 2023 | If you’ve been diagnosed with frontotemporal dementia, receiving support, care and compassion from people you trust can be invaluable. Through your doctor or the Internet, try to find a support group for people with FTD. A support group can provide valuable information tailored for your needs as well as a forum that gives you the opportunity to share your experiences and feelings. A support group could also be helpful to family and caregivers. Caring for someone with FTD can be challenging and stressful because of the extreme personality changes and behavioral problems that often develop. It may be helpful to educate others about behavioral symptoms and what they can expect when spending time with your loved one. When a person with FTD requires 24-hour care, most families turn to nursing homes. Plans made ahead of time will make this transition easier and may allow the person to be involved in the decision-making process.