It’s always a shock when a Hollywood actor’s career is cut short prematurely. In the case of action star Bruce Willis, the news seems especially sad. Willis, known as the take-charge hero of such blockbusters as Armageddon, The Sixth Sense, and the Die Hard movies, has been diagnosed with a degenerative disease of the brain called frontotemporal dementia.

This week, in this article from USA Today, reporter Jordan Mendoza brings us up to speed about the condition of Willis, who stepped away from public appearances one year ago. Frontotemporal dementia may not seem particularly familiar to us, yet there are an estimated 50,000 to 60,000 sufferers nationwide. Because the symptoms run the gamut of unpredictable behaviors, we’re sharing this article in hopes that it might help one of our Blog readers find some answers to a loved one’s health condition.

Family Statement Gives Grim Diagnosis

The USA Today article reports that, recently, Bruce Willis’ family gave the following update about the actor’s health in a public statement: “Since we announced Bruce’s diagnosis of aphasia in spring 2022, Bruce’s condition has progressed and we now have a more specific diagnosis: frontotemporal dementia.”

They added, “Unfortunately, challenges with communication are just one symptom of the disease Bruce faces. While this is painful, it is a relief to finally have a clear diagnosis.” This comes after the March 2022 decision by Willis to step away from acting and other public appearances due to his progressing health issues.

Though less well known than Alzheimer’s disease, frontotemporal dementia, as Mendoza notes, is also a brain disorder that affects many, many people, and it is worth knowing the signs for yourself or a loved one. The following information was provided for Mendoza by experts and organizations including the Association for Frontotemporal Degeneration (AFTD).

Frontotemporal Dementia is a “Group of Brain Disorders”

Mendoza writes, “Frontotemporal dementia, or FTD, represents a group of brain disorders caused by the degeneration of the frontal and/or temporal lobes of the brain, the AFTD says. Those parts of the brain are generally associated with personality, behavior and language, the Mayo Clinic says.”

The disorder can manifest itself with widely varying symptoms, which can make it difficult to diagnose. One way that it differs from Alzheimer’s is that those diagnosed with FTD are typically much younger. “Most people with frontotemporal dementia are diagnosed in their early 40s through early 60s, according to the Alzheimer’s Association,” Mendoza writes. “Willis is 67.”

As one can imagine, FTD is a devastating diagnosis. “FTD has a substantially greater impact on work, family, and finances than Alzheimer’s,” the AFTD says, since sufferers are often in a younger age bracket who are active in their professional life.

Experts Say 60,000 or More Suffer from FTD

“ The AFTD estimates there are about 50,000 to 60,000 people diagnosed with frontotemporal dementia in the U.S,” Mendoza writes. As noted above, “The organization adds [FTD] is frequently misdiagnosed as Alzheimer’s, depression, Parkinson’s or a psychiatric condition, and it typically takes more than three years to get accurately diagnosed.”

For example, Willis’ initial diagnosis was aphasia, a different type of brain disorder which is typified by an effect on speech, reading, and writing abilities. Only later did doctors determine the actor has FTD.

FTD’s Causes Remain a Mystery

The exact cause of FTD is still unknown, but some genetic mutations are associated with the disorder. Johns Hopkins Medicine says, “Some people with FTD have tiny structures, called Pick bodies, in their brain cells. Pick bodies contain an abnormal amount or type of protein.”

There is no known risk factor of developing the disorder, but the Mayo Clinic says your risk of developing frontotemporal dementia could be higher with a family history of dementia. Still, heredity is not absolute. “When assessing the possibility that FTD could be inherited in your family, it’s important to first keep in mind that at least half of FTD cases are sporadic,” according to the AFTD website. “These sporadic cases of FTD occur in people without a known family history of dementia or neurodegenerative illness.”

Other possible causes worth noting include head trauma, according to Dr. Paul Schulz, FTD researcher and professor of neurology at The University of Texas Health Science Center.

FTD’s Symptoms Vary Widely, Can Trigger Misdiagnosis

One of the difficulties in diagnosing FTD is the range of symptoms, which can echo and mimic other disorders. Mainly, FTD affects a person’s behavior, personality, speech, and occasionally motor functions. Mendoza provides the following list of common FTD symptoms, which we have included here verbatim from his article:

• Increasingly inappropriate social behavior that can be impulsive or repetitive 
• Repetitive compulsive behavior, such as tapping, clapping or smacking lips
• Loss of empathy and other interpersonal skills, such as having sensitivity to another’s feelings
• Frequent mood changes
• Lack of judgment and apathy
• Changes in eating habits, usually overeating, developing a preference for sweets and carbohydrates, or eating inedible objects
• Distractibility 
• Difficulty in using and understanding written and spoken language, such as having trouble finding the right word to use in speech or naming objects
• No longer knowing word meanings
• Making mistakes in sentence construction

The AFTD website acknowledges, “FTD is still not a well-known condition and can be difficult to diagnose.” The only way to be certain of an FTD diagnosis is a comprehensive neurological examination.

Experts Agree that FTD Symptoms will Only Worsen

Schulz notes that each FTD patient has unique symptoms, “because it depends on where the disease develops in each patient and how it spreads.” As a result, there is no certainty about which symptom will show up in a particular patient.

“Depending on where it starts, you’ll have a manifestation that goes along with that,” Schulz says. “It will spread to other parts [of the brain] and you’ll get other symptoms.”

Sadly, the disorder is progressive, according to the Mayo Clinic, and Schulz adds that affected people eventually become bedbound.

FTD Currently Has No Known Treatment

Currently there is no known cure for FTD, as there are no treatments that can slow or stop its progression. Instead, Schulz explains that medical professionals will usually focus on therapies to ease the symptoms. 

“Depending on the part of the brain that’s involved, we have medicines that are often helpful,” Schulz says. “Unfortunately, they don’t cure the disease process underlying it, but they can help with the symptoms a lot to make the person’s quality of life much better.”

The AFTD adds frontotemporal dementia can lead to life-threatening issues like pneumonia, infection or injuries from fall, with pneumonia is the most common cause of death. “People don’t actually die of the disease, per se,” Schulz says. “What we lose people from eventually is those medical complications.”

Mendoza ends his article with the sobering fact, from the AFTD, that the average life expectancy from the start of symptoms is 7 to 13 years.

Though not common, FTD is a sad and serious disorder. If you suspect that a loved one or friend may be showing signs of the disorder, it’s worth asking your doctor for their opinion as soon as you can.

Breaking News: Rajiv’s New Book is Here!

We have big news! The long-awaited book by Rajiv Nagaich, called Your Retirement: Dream or Disaster, has been released and is now available to the public.  As a friend of AgingOptions, we know you’ll want to get your copy and spread the word.

You’ve heard Rajiv say it repeatedly: 70 percent of retirement plans will fail. If you know someone whose retirement turned into a nightmare when they were forced into a nursing home, went broke paying for care, or became a burden to their families – and you want to make sure it doesn’t happen to you – then this book is must-read.

Through stories, examples, and personal insights, Rajiv takes us along on his journey of expanding awareness about a problem that few are willing to talk about, yet it’s one that results in millions of Americans sleepwalking their way into their worst nightmares about aging. Rajiv lays bare the shortcomings of traditional retirement planning advice, exposes the biases many professionals have about what is best for older adults, and much more.

Rajiv then offers a solution: LifePlanning, his groundbreaking approach to retirement planning. Rajiv explains the essential planning steps and, most importantly, how to develop the framework for these elements to work in concert toward your most deeply held retirement goals.

Your retirement can be the exciting and fulfilling life you’ve always wanted it to be. Start by reading and sharing Rajiv’s important new book. And remember, Age On, everyone!

(originally reported at www.usatoday.com)