Bruce Willis' Frontotemporal Dementia Diagnosis
- Nearly one year after the family of Bruce Willis announced that he would be stepping away from acting due to an aphasia diagnosis, it has been revealed he is suffering from a rare form of dementia.
- Bruce has been diagnosed with frontotemporal dementia (FTD), a common cause of dementia described by Johns Hopkins Medicine as “a group of disorders that occur when nerve cells in the frontal and temporal lobes of the brain are lost.”
- Since the disorder causes the brain’s temporal lobes to become smaller, the disease can affect behavior, personality, language, and movement.
- “FTD is a cruel disease that many of us have never heard of and can strike anyone. For people under 60, FTD is the most common form of dementia, and because getting the diagnosis can take years, FTD is likely much more prevalent than we know,” the Willis family statement explained.
In a Thursday Instagram post, featuring a photo of Bruce standing happily on a beach, the dad of five’s wife Emma Hemming Willis opened up about his frontotemporal dementia diagnosis.
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“FTD is a cruel disease that many of us have never heard of and can strike anyone. For people under 60, FTD is the most common form of dementia, and because getting the diagnosis can take years, FTD is likely much more prevalent than we know,” the statement read. “Today there are no treatments for the disease, a reality that we hope can change in the years ahead. As Bruce's condition advances, we hope that any media attention can be focused on shining a light on this disease that needs far more awareness and research.”
Bruce’s family recounted their loved one for always believing in “using his voice in the world to help others, and to raise awareness about important issues both publicly and privately.”
They are being open about “this debilitating disease” in hopes to spread awareness and help others who are dealing with a similar struggle.
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“Ours is just one family with a loved one who suffers from FTD, and we encourage others facing it to seek out the wealth of information and support available through AFTD (@theaftd, theaftd.org),” the family statement added. “And for those of you who have been fortunate enough to not have any personal experience with FTD, we hope that you will take the time to learn about it, and support AFTD's mission in whatever way you can.
The news comes after Bruce, who played a boxer on the run in “Pulp Fiction” and a New York City “Die Hard,” was diagnosed with aphasia. According to Johns Hopkins Medicine, aphasia is "a language disorder caused by damage in a specific area of the brain that controls language expression and comprehension" laving the affected person unable to effectively communicate with others.
What Is Frontotemporal Dementia?
Frontotemporal dementia (FTD) is the most common type of dementia for people under 60 years old.
FTD is described by Johns Hopkins Medicine as “a group of disorders that occur when nerve cells in the frontal and temporal lobes of the brain are lost” that caused the lobes to decrease in size.
The disease can alter changes in a person’s behavior, personality, language, and movement.
“These disorders are among the most common dementias that strike at younger ages,” Johns Hopkins explains. “Symptoms typically start between the ages of 40 and 65, but FTD can strike young adults and those who are older. FTD affects men and women equally.”
Common Types of FTD:
- Frontal variant (affects behavior and personality)
- Primary progressive aphasia (makes it difficult for a person to communicate and affects speech)
- Semantic dementia (affects the ability to use and understand language)
“A less common form of FTD affects movement, causing symptoms similar to Parkinson’s disease or amyotrophic lateral sclerosis (Lou Gehrig's disease),” Johns Hopkins adds.
The cause of the disease remains unknown, however, specific subtypes of FTD have been linked to mutations on a few genes.
Symptoms of FTD
Common symptoms of FTD, which start gradually and progress steadily or rapidly, are:
- Behavior and/or dramatic personality changes, such as swearing, stealing, increased interest in sex, or a deterioration in personal hygiene habits
- Socially inappropriate, impulsive, or repetitive behaviors
- Impaired judgment
- Apathy
- Lack of empathy
- Decreased self awareness
- Loss of interest in normal daily activities
- Emotional withdrawal from others
- Loss of energy and motivation
- Inability to use or understand language; this may include difficulty naming objects, expressing words, or understanding the meanings of words
- Hesitation when speaking
- Less frequent speech
- Distractibility
- Trouble planning and organizing
- Frequent mood changes
- Agitation
- Increasing dependence
Of course, symptoms can vary as they are dependent on what part of the brain is affected.
“Some people have physical symptoms, such as tremors, muscle spasms or weakness, rigidity, poor coordination and/or balance, or difficulty swallowing,” Johns Hopkins explains. “Psychiatric symptoms, such as hallucinations or delusions, also may occur, although these are not as common as behavioral and language changes.”
Treating FTD
“Today, there is no cure for FTD, and no treatments available to slow or stop the progression of the disease,” the AFTD advises. “However, if you or a family member or loved one are affected, there are important steps that you can take to preserve and maximize quality of life. A growing number of interventions – not limited to medication – can help with managing FTD symptoms.”
Anyone in need of guidance and resources can call AFTD’s HelpLine at 866-507-7222 or email [email protected].
Caregiving Isn’t Easy; Recognize That You May Need Help
When a loved one is diagnosed with cancer or a rare disease like Bruce Willis, it can turn your world upside down. Your attention will suddenly turn from your job and family to caregiving. And no matter how much you plan for your new role, the enormity of it can take you by surprise.
How to Be a Better Caregiver for Your Loved One
"Caregiving is a huge job. It's going to impact your health and your physical well-being. It will impact your finances, your social life, your emotions, and your mental energy," Amy Brown, nurse manager of Gynecologic/Oncology at Johns Hopkins Hospital in Baltimore, Maryland, tells SurvivorNet.
Caregiving can suck up every moment of your free time. Realize that you may need help. "I learned this the hard way myself," Brown says. "I have been the caregiver to my dad for 12 years. And I'm a nurse and I'm designed and equipped to handle that, and I tried to do it myself and failed miserably."
She stresses the importance of caring for yourself while you care for your loved one. "Get sleep, eat well, exercise. Find something that brings you joy every day, whether it is going for a walk, praying, meditating, watching a movie, listening to an audio book, or getting together with friends."
Though caregiving can be a difficult and sometimes thankless job, it can be very rewarding as well.
"Even though this is not what you signed up for, this is not how you planned your life, and this may be the biggest crisis of your life that you didn't see coming, it has the potential to be incredibly meaningful," Brown says.
Caregiving Isn't Easy; Recognize That You May Need Help
Contributing: SurvivorNet Staff
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