The daughter of actor Bruce Willis has shared a rare health update about her father’s battle with a rare and aggressive dementia.
Rumer Willis, 35, suggested his 69-year-old father is in good spirits, telling the Today is the show just, “It’s so good.”
He added that he continues to be a wonderful grandfather to his young daughter Louetta, enjoys music and spending quality time with his family.
However, although the family has not said it publicly, doctors tell DailyMail.com that the tragic reality is that patients with Willis’s condition usually become mute just two or three years after diagnosis.
Bruce, a father of five, has suffered from frontotemporal dementia since approximately spring 2022.
Actor Bruce Willis’ daughter Rumer (pictured) has given the public an update on her father’s health with a rare form of dementia which affects his ability to speak, saying: ‘He’s so good.’
Willis is pictured with his daughter Scout in early 2024. The Willis family has said that the actor’s daily life consists of spending quality time with his loved ones while he concentrates and listens to familiar music.
FTD is different from the most well-known type of dementia, Alzheimer’s disease. But unlike Alzheimer’s, memory is not the first to be lost.
Aphasia (difficulty speaking and expressing thoughts with words) is the first symptom for most. Willis has been struggling with this for two years.
FTD also warps people’s personalities as it affects the region of the brain responsible for mood regulation, causing sudden violent outbursts, inappropriate behavior in public, lack of self-awareness, and anxiety.
People with FTD usually die within eight to ten years after diagnosis. About 80 percent of FTD patients who experience behavioral changes have died by eight years.
Dr. Chris Winter, a neurologist practicing in Virginia, told DailyMail.com: Typically, once symptoms start, it’s a pretty steady progression over the next few years.
“Generally speaking, when they are diagnosed, there is a prognosis of five to 10 years, but in terms of disability, it is within a few years, and many people are just not communicative.”
Playing music for a person with FTD, specifically music they would normally recognize, is known to increase their sense of familiarity with their surroundings and prevent the mood swings that are so characteristic of this type of dementia.
Dr Winter said: “It’s interesting that the way we encode music can be different to language, so a lot of times these people can sing a song and have trouble speaking.” That is why music is very useful.”
Bruce’s daughter, Tallulah Willis, one of three he shares with ex-wife Demi Moore, said in November 2023 on the Drew Barrymore Show: “I see love when I’m with him, and he’s my dad, and he loves me “.
“Playing music… and sitting in that and this energy of love, it’s really special.”
Willis also has two daughters, Mabel and Evelyn, ages 12 and nine respectively, with his current wife, Heming Willis.
Given Willis’ resources, he can receive the highest level of care, which will include constant monitoring to prevent fatal falls or infections, and help from a neurologist to monitor disease progression.
Helping Willis with the aphasia variant of FTD requires speaking slowly and in simple sentences, and asking for clarification when the caregiver does not understand what the person is saying.
During an appearance on Today, Rumer Willis praised her father as a true ‘girl dad’ and described seeing him with her little girl Louetta.
Family: Willis and his wife Heming Willis also have two daughters together, Mabel, 10, and Evelyn, eight.
Dr Keith Vossel, a dementia specialist at the University of California, Los Angeles, told DailyMail.com: “It is a disease that progresses slightly faster than Alzheimer’s, which typically takes 10 years from diagnosis to need. of long-term treatment 24 hours a day. careful.
“(With FTD) it takes more than three to five years from the diagnosis of the need for 24-hour care services.”
It may also be helpful to use gestures and photo albums to communicate with the person with FTD.
Supporting a person like Willis with FTD will also require the help of a primary care doctor, the kind you would go to for a checkup, as well as a nurse, a psychiatrist, a speech and language therapist, a neurologist, and a health worker. social. .
Movement problems may also require the help of a physical or occupational therapist. This can help prevent falls that could lead to broken bones or fatal head injuries.
While Willis will most likely never need a feeding tube or help eating, many people with FTD will crave sweet things and unhealthy foods due to the areas the disease affects.
Dr Vossel said: “In terms of eating habits, people generally retain their ability to eat during the course of the illness, but they may need some supervision in what they eat because they may crave sweet things and food choices. demanding”. You are not eating a well-balanced diet.
Damage to the frontal lobes affects self-control and the ability to regulate behaviors, such as binge eating or lack of control over food choices. In this case, Willis will likely have the help of a dietitian and personal trainer to stay healthy as these symptoms progress.
He added: “Often the treatment regimen will change month to month depending on cognitive behaviors or symptoms.”
Establishing a routine that the person can follow and become familiar with is crucial to preventing behavioral changes and anxiety.
Since Willis’ family revealed that the actor had suffered from primary progressive aphasia, an aspect of FTD, the condition has been on the public’s radar.
Devastating: Bruce Willis’ family revealed last year that the actor had been diagnosed with frontotemporal dementia (FTD), less than a year after he retired from acting due to his battle with aphasia, a symptom that impairs speech.
FTD falls under the same broad spectrum of dementias that encompasses Alzheimer’s disease, but is much less common, with an estimated 50,000 to 60,000 cases in the U.S. at a time, most of whom are between 45 and 65 years old.
Caring for someone with FTD means knowing that they will never go back to the way they were. Two years after his aphasia diagnosis, Willis can’t speak like he used to in his hit movies.
Since there are no treatments to slow the progression of the disease, which causes personality and speech changes over three to five years, care often involves stimulating the person’s mind, making them as comfortable as possible.
FTD by itself does not kill the person who suffers from it. People rarely die from FTD, rather than dying with it, Dr. Winter added.
It can weaken the body to the point of making it extremely susceptible to disease. Pneumonia is the most common cause of death.
Changes in gait are also characteristic of FTD, which may include changes in a person’s motor skills. This greatly increases the risk of falls.
Dr Winter said: “It’s worrying that they make bad decisions, their gait is unsteady, they fall, break their hip, go to hospital, get an infection and die.”
People with FTD often first show emotional and behavioral problems, such as stealing, swearing, inappropriate comments in public, impulsivity, and repetitive behaviors. Many people with this condition are diagnosed early on with mood problems, such as depression and bipolar disorder.
Aphasia is also an important symptom and there is a specific variant of FTD that includes primary progressive aphasia as a marker of disease progression.
The brain is a complex organ composed of distinct areas that govern a variety of different but specific human functions.
The frontal lobe is heavily involved in behavior and personality. It is sometimes called the “executive center” because it is responsible for higher cognitive functions such as problem solving, planning, and decision making.
The temporal lobes are located on each side of the brain above the ears, which are key to auditory processing and understanding spoken and written language, as well as remembering the meaning of words, resulting in the progressive loss of the ability to speak.
Those areas are also crucial for interpreting emotions in a person’s voice and face, recognizing faces, and remembering verbal information.
The parietal lobe is towards the back of the head. It processes sensory information such as pain and temperature, interprets words and language, and determines spatial awareness.
The occipital lobe, located just above the base of the brain, processes what the eyes see. It mainly processes visual information, depth and color perception, shape and movement.