Wendy Williams has frontotemporal dementia (FTD) and primary progressive aphasia (a disorder that affects a person’s ability to communicate), her care team recently confirmed in a statement. Ahead of the new documentary, Where Is Wendy Williams? the group wanted to “correct inaccurate and hurtful rumors about her health,” adding that people with these conditions “face stigma and misunderstanding, particularly when they begin to exhibit behavioral changes but have not yet received a diagnosis.”
Over the past few years, Williams, 59, “began to lose words, act erratically at times, and have difficulty understanding financial transactions,” the statement noted. She reportedly entered a treatment facility for “cognitive issues” in April 2023 and has been there since, per People.
If these conditions sound a bit familiar, it’s because the family of Bruce Willis, 68, announced that the actor also has FTD and aphasia last year. In June 2023, Willis’s daughter Tallulah wrote an emotional essay for Vogue, in which she shared that her dad had developed a “vague unresponsiveness” that their family chalked up to hearing loss from years of starring in action movies. But his unresponsiveness grew over time. “I sometimes took it personally,” Tallulah wrote. “I thought he’d lost interest in me.”
While Williams and Willis are on different health journeys, both of their loved ones have said they had trouble recognizing FTD symptoms for what they were—and that’s not uncommon. Here’s why this form of dementia can be tough to diagnose.
Frontotemporal dementia symptoms are often subtle or vague at first.
FTD is an umbrella term for a group of disorders that largely result from damage to the neurons in the brain’s frontal lobes (behind the forehead) and temporal lobes (behind the ears). In FTD, parts of the lobes shrink, which can trigger a slew of life-altering symptoms, depending on which area of the brain is affected, according to the National Institutes of Health (NIH). One person with the condition may eventually have a hard time speaking or understanding language; another may show a major shift in their personality.
Problems with the frontal lobes of the brain, in particular, can cause “disinhibited behaviors,” Clifford Segil, DO, a neurologist at Providence Saint John’s Health Center in Santa Monica, California, tells SELF. This can look like a lot of things: swearing, stealing, acting impulsively, or making inappropriate or sexual comments without picking up on standard social cues.
But the spectrum doesn’t stop there: Showing an uncharacteristic lack of judgment, being apathetic toward loved ones, withdrawing emotionally, having trouble working or prioritizing tasks, feeling agitated or distracted, a loss of energy or motivation, and compulsive eating can all be signs of FTD too.
If none of these symptoms instantly make you think of dementia, that’s because they probably shouldn’t—just one or a few of them can be attributed to any number of issues, and that’s why FTD can be so hard to pick up on at first. It “gradually robs people of basic abilities,” as the NIH puts it. “The changes are gradual because the affected areas [of the brain] are still intact but simply not as robust or resilient as they once were,” Amit Sachdev, MD, the medical director in the department of neurology at Michigan State University, tells SELF.
Douglas Scharre, MD, the director of the Center for Cognitive and Memory Disorders at The Ohio State University Wexner Medical Center echoes this point: “There is not a sudden change in behaviors or cognitive abilities that make it obvious that something is going on until the symptoms are problematic.”
Unfortunately, there’s a lot of stigma that floats around FTD since it “can involve odd behaviors that are thought to be under the person’s control when they are not,” Dr. Scharre explains. “The brain is responsible for all of our behaviors and how we react to others. When specific areas of our brains are not working well or damaged, then how we react and how we behave can be alarmingly altered.”
Here’s why getting an accurate FTD diagnosis can take a while.
FTD is a degenerative disease. One thing that makes it unique is that the symptoms “become increasingly worse over time,” Corey McMillan, PhD, associate professor of neurology at the University of Pennsylvania and research director at the Penn Frontotemporal Degeneration Center, tells SELF. A person can have “occasional bizarre behaviors or subtle language challenges years before it becomes severe enough to make a clear diagnosis.”
Plus, FTD tends to manifest in younger folks compared to other forms of dementia—about 60% of people impacted by it are between the ages of 45 and 64, according to the National Institute on Aging (NIA). This can, understandably, be hard to fathom at first: “People have difficulty accepting a dementia diagnosis” since it’s “more often recognized as an older persons’ disease,” Dr. McMillan says.
Overall, FTD is much rarer than other forms of dementia like Alzheimer’s, so “it is lower on the index of suspicion of a diagnosis,” Dr. Segil says. There isn’t a single lab test that can confirm an FTD diagnosis specifically. Still, certain tools—including genetic testing, brain imaging, and psychiatric evaluations—can help a doctor rule out other potential health conditions first. For example, if a person doesn’t have a history of mental health conditions like bipolar disorder or schizophrenia, “then that would make those disorders much less likely to show up for the first time later in life,” Dr. Scharre says. “If there is no specific reason for apathy—grief, environmental or life circumstances, or depression—then you might consider frontotemporal dementia.”
Plus, a doctor needs evidence that a person is progressively declining based on their behavior and ability to communicate over months or years. “A frontotemporal dementia diagnosis usually occurs after a patient has established care with a neurologist who can follow them over time and note which symptoms have worsened,” Dr. Segil says.
We all occasionally have odd social interactions or trouble finding our words—this is normal and bound to happen more as you get older. But as Dr. McMillan notes, if you notice concerning changes in a loved one’s behavior and they become more severe over time, “then individuals and their care partners should consider medical evaluation from a neurologist or psychiatrist.”
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