How Common Is Frontotemporal Dementia? Wendy Williams Diagnosed with Rare Brain Disease

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  • TV host Wendy Williams has been diagnosed with frontotemporal dementia and aphasia, the same neurodegenerative diseases that actor Bruce Willis has.

  • The two conditions are caused by shrinkage in certain parts of the brain, and can lead to symptoms such as trouble communicating or changes in personality.

  • It’s estimated that about 50,000 to 60,000 Americans have frontotemporal dementia, but it’s likely under-diagnosed, experts said.

Wendy Williams, former daytime talk show host, has been diagnosed with frontotemporal dementia (FTD) and aphasia, her care team announced on Thursday. The statement sought to “correct inaccurate and hurtful rumors about her health.”

“Over the past few years, questions have been raised at times about Wendy’s ability to process information,” the statement read. “Many have speculated about Wendy’s condition, particularly when she began to lose words, act erratically at times, and have difficulty understanding financial transactions.”

Williams, 59, was officially diagnosed in 2023, following a “battery of medical tests.” Her official diagnosis is primary progressive aphasia and FTD. Primary progressive aphasia is a subtype of FTD that affects a person’s ability to communicate through speaking, reading, writing, or comprehending others.

Williams isn’t the only celebrity who has received an FTD diagnosis in the recent past—actor Bruce Willis, 68, was also diagnosed with the degenerative brain disease in February 2023.

FTD and related disorders are considered rare, but Willis’ and Williams’ diagnoses highlight that they’re not completely uncommon, said Brian Appleby, MD, professor of neurology at Case Western Reserve University.

“The field is getting a little better at diagnosing, so we’re seeing more public figures being diagnosed,” Appleby told Health. “Of course, I think their families weren’t aware of this condition, and that might be why we’re hearing more about it lately.”

Here’s what experts had to say about how common FTD is, and why spreading awareness can lead to a better understanding of the disease’s prevalence.

<p>Bravo / Contributor / Getty Images</p>

Bravo / Contributor / Getty Images

How Common Is Frontotemporal Dementia?

FTD—sometimes called frontotemporal disorders—is a group of disorders that gradually damage the brain’s frontal and temporal lobes, which are responsible for thinking and behavior. According to Appleby, FTD is an umbrella term for “shrinkage of the front and side parts of the brain—the frontal and temporal lobes—that give you rather unique symptoms.”

The three disorders that can lead to FTD are: behavioral variant frontotemporal dementia (bvFTD), which involves changes in personality and behavior; primary progressive aphasia, or changes in communication; and movement disorders.

It’s unclear how common FTD is, but some estimates suggest that there may be 50,000–60,000 Americans currently living with the two main types, with the vast majority of them being between 45 and 65 years old. FTD is one of the most common drivers of early-onset dementia, or dementia that develops in people under 65, said Appleby.

Getting a diagnosis of both FTD and primary progressive aphasia is also not uncommon. “Frontotemporal dementia (FTD) and primary progressive aphasia usually go together,” May Kim-Tenser, MD, an associate professor of clinical neurology at Keck Hospital of USC, told Health.

It’s also possible for a person to eventually have both bvFTD and primary progressive aphasia. “Some [patients] may have one or the other, but with time they can develop both as neurons from the frontal lobe and temporal lobe die and atrophy in those parts of the brain occur,” said Kim-Tenser.

Appleby added: “You’re going to have people that start out with just having primary progressive aphasia, and they have isolated problems with articulating their speech. And then later on, they develop behavioral symptoms, or vice-versa.”

Related: Study Finds 15 Health and Lifestyle Factors That Could Increase Risk of Early Dementia

Greater Awareness Can Lead to More Diagnoses

FTD can be difficult to diagnose because symptoms often mimic other conditions. Because of this, the cluster of diseases is likely more common than current diagnoses suggest.

“It’s likely under-diagnosed,” said Appleby. “Because it’s a rare disease, not a whole lot of people are experienced or comfortable making the diagnosis—usually, these diagnoses are only really made at specialty centers.”

Symptoms of FTD can vary from person to person, and depend on which type of FTD someone has. Which part of the brain is affected also has a bearing on symptoms—changes in the frontal lobe, for example, are most often associated with behavioral or movement changes; degeneration in the temporal lobe can show up as issues with language or emotion.

Another roadblock for diagnosis comes from the lack of specific testing for FTD. Unlike other neurodegenerative diseases such as Alzheimer’s disease, there aren’t any biomarkers that show a person has shrinkage in their frontotemporal lobe, said Appleby.

Instead, healthcare providers must often use tests to rule out other conditions, or order imaging tests like MRIs for the brain. However, in the early stages of the disease, damage in the brain isn’t always noticeable on those tests, said Appleby.

Healthcare professionals have to look for the damage on an MRI, which isn’t always noticeable in early stages of the disease, he said.

For now, there’s no cure for FTD and researchers don’t yet have a firm grasp on what causes the condition. About a quarter of cases seem to be linked to genetic mutations, Appleby said, but there’s not much a person can do to prevent FTD or primary progressive aphasia.

However, more awareness about FTD could lead to more diagnoses, and in turn provide more information about just how prevalent these conditions are. More early diagnoses also means that people struggling with FTD and primary progressive aphasia will have access to care and treatments such as antidepressants or speech therapy if they need it.

Quick, accurate FTD diagnoses also pave the way for more empathy and understanding among family and caregivers, too.

“Not all dementias are Alzheimer’s disease, and there are some people that have significant behavioral changes as part of their dementia,” Appleby said. “That may look like a personality issue or a psychiatric issue, but it’s a brain illness and they can’t help it.”

Related: How To Support a Loved One Showing Signs of Dementia

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