By: Kathy Hubbard
“My mom absolutely doesn’t realize or think that there is anything wrong with her. That’s good for her, but a lot for me. But, if she did realize, and understood, that she has dementia, then it wouldn’t really be dementia would it?” I found that quote a few days ago and I immediately wanted to share it with you.
There are over 100 different types and causes of dementia. Today we’re looking into frontotemporal dementia (FTD). It’s the form of dementia that Bruce Willis has, but that’s not particularly important to this article. What’s important is to know is that it’s not always part of getting old.
Mayo Clinic says, “Frontotemporal dementia can be misdiagnosed as a mental health condition or as Alzheimer’s disease. But FTD tends to occur at a younger age than does Alzheimer’s disease. It often begins between the ages of 40 and 65.”
Frontotemporal dementia, aka frontotemporal lobar degeneration is an umbrella term for a group of diseases that mainly affect the areas of the brain associated with personality, behavior and language. Therefore, an early symptom is often behaving in ways that seem out of character.
Other symptoms according to Mayo Clinic include, “reduced ability to understand or respond to other people’s feelings; trouble planning, organizing or making decisions; repeating words or actions; changes in speech or language, such as trouble finding the right word and, lack of interest, also called apathy.”
In FTD the frontal and temporal lobes of the brain shrink, aka atrophy. Symptoms depend on what part of the brain is affected. It used to be called Pick’s disease because it was physician Arnold Pick, M.D., who first described a patient with these distinct symptoms back in 1892.
The Alzheimer’s Association explains that the most common variant of FTD is called behavioral variant (bvFTD). It most often occurs in people in their 50s or 60s but can develop as early as in their 20s or as late as in their 80s.
“In behavioral variant frontotemporal dementia, the nerve cell loss is most prominent in the areas that control conduct, judgment, empathy and foresight, among other abilities.”
The second major form of FTD, primary progressive aphasia (PPA) affects language skills, speaking, writing, and comprehension. It normally presents in people before age 65.
“The two most distinctive forms of PPA have somewhat different symptoms,” Alzheimer’s Association explains. “In semantic variant of PPA, individuals lose the ability to understand or formulate words in a spoken sentence. In nonfluent/agrammatic variant of PPA, a person’s speaking is very hesitant, labored or ungrammatical.”
Mayo Clinic says, “Rare subtypes of frontotemporal dementia cause movements similar to those seen in Parkinson’s disease or amyotrophic lateral sclerosis (ALS).” Which is why FTD is so difficult to diagnose.
These movement symptoms may include tremor, rigidity, muscle spasms or twitches, poor coordination, trouble swallowing, muscle weakness, laughing or crying at times that don’t match the situation, or falling or having trouble walking.
They typically don’t know what causes the lobes of the brain to shrink and have certain substances build up. Mayo says that “in some types of FTD proteins such as tau or TDP-43 build up in the brain and damage nerve cells.”
FTD can run in families. “Some inherited gene changes are linked to certain types of the condition,” Mayo says. “But many people with frontotemporal dementia have no known family history of the disease. Researchers have confirmed that some of the same gene changes also are seen in ALS. More research is being done to understand the connection between the conditions.”
As I said, diagnosis can be challenging. Your healthcare team will most likely order blood tests to rule out other conditions, such as liver or kidney disease. Then perhaps a sleep study to rule out sleep apnea will be in order.
“Healthcare professionals may test your thinking and memory skills. This type of testing can help identify the type of dementia, especially in early stages. It also can help distinguish FTD from other causes of dementia,” Mayo says. Plus, the team may order brain scans such as MRI, FDG-PET scans or an amyloid PET scan.
While researchers are studying ways to make FTD easier to diagnose, your primary care provider will be your first stop if you begin exhibiting symptoms.
Kathy Hubbard was a charter member of Bonner General Health Foundation. She can be reached at [email protected]. This article was written for publication in the Bonner County Daily Bee on June 10, 2026.