Bruce Willis’ daughter Tallulah revealed to the magazine Vogue, as he copes with his father’s serious illness. He suffers from frontotemporal dementia (FTD), which significantly affects both his life and the functioning of the entire family.
“When I talk about Bruce, I keep switching between the present and the past: Is, was, is, was. That’s because I put hopes in my father that I don’t like to give up,” wrote the twenty-nine-year-old daughter of the star of the movie Deadly Trap and his ex-wife Demi Moore in a lengthy confession.
Although the actor’s illness is not so well known, it is about the second most common, but still a relatively rare degenerative brain disease. The name dementia can be somewhat misleading for the average person, as it is often associated with memory problems. In fact, FTD causes changes in a person’s behavior and character, thinking and moods.
“Frontotemporal dementia, in contrast to the more well-known Alzheimer’s disease, occurs at a younger age and is also more often hereditary. In addition, they also have different pathophysiological backgrounds. This manifests itself in the presence of the main pathological protein in the brain, which causes the disease,” explains neurologist Lenka Krajčovičová from the neurological clinic of the Faculty Hospital U Svatá Anna in Brno, explaining the difference from the more common and well-known brain disease. The fundamental difference is that the disease already affects people in their fifties.
“There are two basic forms of frontotemporal dementia. The first is manifested by changes in a person’s personality and behavior leading to antisocial manifestations, disrespect of social norms and values, loss of empathy and emotional ties, or significant apathy and loss of interest. The second form affects speech and is manifested by problems in expression. This form of the disease is then divided according to whether speech comprehension or expression and sentence formation are more affected,” Krajčovičová tells Seznam Zprávy.
“I thought I wasn’t interesting enough for him”
Tallulah also describes her father’s apathy. In her confession, she states that she knew something was wrong long before the diagnosis. The changes began with a kind of “unresponsiveness” that the family attributed to the Hollywood star’s hearing loss. But the changes in Willis’s behavior deepened over time and Tallulah could not explain them and blamed herself for them.
“Later, the non-reaction spread and I sometimes took it personally. He had two children with my stepmother and I thought he had lost interest in me. Although this couldn’t be further from the truth, my adolescent brain struggled with it. I thought I wasn’t beautiful enough for my mother and I wasn’t interesting enough for my father,” she writes.
According to Krajčovičová, the disease affects every aspect of the patient’s life. Speech problems limit a person’s ability to communicate with others, which creates significant obstacles both for work and maintaining relationships. Possible changes in the patient’s behavior and personality strongly disrupt interpersonal relationships. The patient also gradually loses the ability to independently perform normal daily tasks.
Dealing with a sick person is difficult. Patients whose disease manifests itself in behavioral changes are oblivious to symptoms and lack realistic judgment. In addition, FTD develops gradually and insidiously, and the transition from the early stages of the disease to the more serious phase of dementia tends to be gradual.
“The beginning phase of the disease, when only mild symptoms are present, is often difficult to recognize. With a fully developed clinical picture of frontotemporal dementia, the diagnosis is usually clearer, although sometimes it can be mistaken for the aforementioned Alzheimer’s disease or some psychiatric illness,” says Krajčovičová.
Caring for a sick person is also quite demanding due to the nature of the disease. According to Krajčovičová, considerable patience and empathy are required.
For Tallulah Willis, the time when her father’s FTD began to manifest was even more difficult because she herself suffered from anorexia at the time. “I’ll admit I’ve had my fair share of avoidance and denial in recent years with Bruce’s decline, which I’m not proud of. The truth is, I was too sick to handle it myself,” she wrote in the confessional.
“But I remember the moment it hit me painfully. In the summer of 2021, I was at a wedding and the father of the bride gave a moving speech. I suddenly realized that I would never have this moment when my dad talks about me as an adult at my wedding. It was overwhelming. I left the table, went outside and cried.”
I’m like an archaeologist, Willis’ daughter says
After a stint in rehab, she now feels strong enough to take care of her father on her own. Whenever she visits him now, she takes pictures of everything to document their time together, and says she has every one of his voicemails saved on her hard drive.
“I’m like an archaeologist looking for treasure in things I didn’t pay attention to before,” she said. “I find myself trying to document, to create a record for the days he won’t be here to remind me of him and us.”
Science cannot yet cure FTD. Medicines that could do this are still in research, so the last stage of the disease is the patient’s death. “At the moment, we only have medicines that suppress the symptoms of the disease,” says Krajčovičová.
However, with proper treatment and care, we can improve patients’ quality of life and prevent complications. “Speech disorders can be positively affected by well-conducted speech therapy care. Brain diseases can then generally be prevented by a healthy lifestyle,” he continues.
According to Krajčovičová, the Bruce Willis case could shed light on this relatively unknown disease to the public. “When a disease starts to be talked about or written about more in the media, in addition in connection with a well-known personality, the interest in information and awareness about it will increase in the population.”
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