What Is Frontotemporal Dementia?

“Some lose their understanding of the difference between spoiled meat and fresh meat. They won’t realize that the food is not edible and they’ll eat it,” says Dr. Bradford Dickerson, director of the frontotemporal disorders unit at Massachusetts General Hospital. 

Some develop rigid preferences for sweets or carbs. Dickerson recalls one patient with FTD who’d make himself a peanut butter sandwich every morning. “When his wife told him to start packing his suitcase to go on a trip, the first thing he put in was three big jars of peanut butter,” he says.

About 40 percent of Miller’s FTD patients commit nonviolent crimes, like urinating in public or shoplifting. They don’t realize what they are doing.

In other cases, people with FTD begin showing a lack of empathy, which can be painful to families. “One of my patients’ wives cut off her fingertip with clippers, and rather than rushing her to the hospital, he asked her to stop crying in front of the neighbors,” Miller says. “Grandparents love their grandchildren, but FTD patients may have no interest. It’s heartbreaking.”

During a session about FTD at the 2025 Gerontological Society of America conference, Lauren Massimo, codirector of the Penn FTD Center, said, “FTD caregivers have higher levels of stress than [caregivers for people with] any other form of dementia.”

In a surprising turn, some people who lose language due to FTD initially develop more visual engagement and curiosity, Miller says. “Not everyone becomes an artist, but many become more visually interested,” he says. As the part of the brain involved in language deteriorates, the area involved in visual artistic creativity becomes stronger for a period.

It’s now believed that French composer Maurice Ravel wrote “Boléro” during the early stages of FTD. Years later, Canadian scientist and artist Anne Adams painted her interpretation of “Boléro” when she had FTD.

What causes FTD, and who is at risk?

Doctors don’t know what causes FTD in most people. At least half of those diagnosed have no known family history of dementia or neurodegenerative illness, according to the AFTD.

Roughly 20 percent of people with FTD have inherited a genetic risk for it. But, Dickinson says, it’s not always the same problematic gene.

“There’s nothing simple about this disease,” she says.

About 10 to 15 percent of people with FTD also have amyotrophic lateral sclerosis (ALS). Those with FTD-ALS, as it’s called, typically experience behavioral FTD symptoms before the motor symptoms of ALS.

How is FTD diagnosed?

Getting an FTD diagnosis can be challenging. Often, families notice something is off with a loved one but don’t know exactly what until they get an FTD diagnosis, which sometimes requires a protracted process.

“Bruce Willis’ wife, Emma Heming Willis, has said FTD sneaks in, it doesn’t enter the room with this huge crash,” Dickinson says.

Matt LeKrey, cofounder of Remo Health, a virtual dementia care provider in Jackson, Wyoming, can attest to that. Ten years ago, when his father, Peter Krey, was 56, Matt noticed a new behavior.

No matter what conversation Peter was having, “it would always land on the same three topics: his diabetes, work and family; it was like having a Spotify playlist with the same three songs on it,” LeKrey says.

Peter Krey’s endocrinologist noticed as well, and referred him to a neurologist, which led the family on an 18-month journey that culminated in his aphasia diagnosis in 2017. Since then, LeKrey says, his father has developed behavioral symptoms resulting in repeated run-ins with police, after escaping his house and walking into someone else’s home.

As the Krey and Treaster families found, physicians often don’t immediately recognize the brain disease.

A survey by the AFTD and the FTD Disorders Registry of 956 family members, caregivers and friends of people with FTD found that most saw three or more doctors and spent more than two years seeking a diagnosis.

“Initially, the behavioral variant is often mistakenly diagnosed as substance abuse, bipolar disorder, depression or some other major psychiatric condition,” Dickerson says. FTD is also misdiagnosed as Alzheimer’s or Parkinson’s disease, according to the AFTD.

Neurologists can determine FTD through a lengthy combination of cognitive evaluations by neurologists or other health care professionals, followed by MRI (magnetic resonance imaging) brain scans and FDG-PET (fluorodeoxyglucose positron emission tracer) scans.

How is FTD treated?

There is no cure for FTD, and there are no treatments approved by the U.S. Food and Drug Administration, although some doctors try medications off-label, for uses not spelled out by the FDA.

For compulsive behavior issues, antidepressants are the first line of defense, Irwin says. They can help lower the intensity of behaviors that interfere with daily activities. 

The time to talk to the doctor about halting the medications is when they induce apathy; it can torment caregivers when loved ones seem not to care about them.

Irwin also says family caregivers can help manage a person’s behavioral FTD by adding structure to their lives with routines and planned activities.

People with aphasia can benefit from working with speech-language therapists. “They won’t be able to recover language that was lost, but they often can help people develop compensatory strategies that enable them to communicate in a more functional way,” Dickerson says.

Caregiver support groups can reduce the stress and challenges that often come when assisting a loved one with FTD.

What can you expect with FTD?

The disease’s progression varies enormously — it can last as little as two years and as long as 20 or more. Median survival is about eight years from disease onset and roughly five years from diagnosis.

People living with FTD may face other health problems. They can become more likely to get pneumonia because the disease can lead to trouble swallowing. They can also suffer falls because FTD can cause balance issues.

“People with FTD progressively lose cognitive functions and independent abilities to do things and take care of themselves,” Dickerson says. “Eventually, most of them either need 24/7 care at home or residential nursing home care.”

Peter Krey now has 24/7 home care. “I think we’re within the final six to 12 months of my dad’s journey,” his son Matt says. “So we’re trying to keep him at home as much as possible.”