Bruce Willis’ daughter shares rare update on dementia-stricken star’s health

Actor Bruce Willis’ daughter has shared a rare health update about her father’s battle with a rare and aggressive dementia.

Rumer Willis, 35, suggested her 69-year-old father is in good spirits, telling the Today show simply, ‘He’s so good.’ 

She added that he remains a wonderful grandfather to her infant daughter Louetta, enjoys music, and spends quality time with his family.

However, while the family has not said it publicly, doctors tell DailyMail.com that the tragic reality is patients with Willis’ condition are usually mute within just two to three years of a diagnosis.

Bruce, a father of five, has been suffering from frontotemporal dementia since around spring 2022.

FTD is different from the more well-known type of dementia, Alzheimer’s disease. But unlike Alzheimer’s, memory is not the first to go.

Aphasia – difficulty speaking and putting thoughts into 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, prompting  sudden violent outbursts, inappropriateness in public, a lack of self-awareness, and anxiety. 

People with FTD typically die within about eight to 10 years of being diagnosed. About 80 per cent of FTD patients experiencing behavioral changes are deceased by eight years.  

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Dr Chris Winter, a neurologist practicing in Virginia, told DailyMail.com: Usually, once symptoms start, it’s a pretty steady progression over the next few years.

‘Generally speaking, when they’re diagnosed, there’s a five- to 10-year prognosis, but in terms of the disability, it’s in a few years, a lot of individuals are just not communicative.’

Playing music for a person with FTD, specifically music they would typically recognize, is known to increase their sense of familiarity with their environment and stave off mood changes that are so characteristic of this type of dementia.

Dr Winter said: ‘It’s interesting, the way we encode music can be different than language, so a lot of times, these individuals can sing along to a song and have trouble speaking. So music is very helpful.’

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 it’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, 12 and nine respectively, with current wife Heming Willis.  

Given Willis’ resources, he is able to get the highest caliber care which will include constant monitoring to prevent fatal falls or infection, and help from a neurologist to monitor the progression of the disease.  

Helping Willis with the aphasia-variant of FTD requires speaking slowly and in simple sentences, and asking for clarification when the caretaker does not understand what the person is saying.

Dr Keith Vossel, a dementia specialist at the University of California, Los Angeles, told DailyMail.com: ‘It’s a slightly faster progressing disease than Alzheimer’s which is generally 10 years in terms of from the point of diagnosis to needing long term round the clock care. 

‘[With FTD] it’s more like three to five years from diagnosis of needing 24-hour care services.’  

Using gestures and photo albums to communicate with the person with FTD can also be helpful.

Supporting a person like Willis with FTD will also require the help of a primary care doctor – the type you would go to for a checkup – as well as a nurse, a psychiatrist, a speech and language therapist, a neurologist, and a social worker. 

Movement issues may also require the help of a physical or occupational therapist. This can help prevent falls that could result in broken bones or fatal head injury. 

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 the eating habits, people usually retain their ability to eat through the course of the disease but they might need some supervision in what they eat because there can be cravings for sweet things, fastidious food choices so they’re not eating a well balanced diet. 

The damage to the frontal lobes affects self-control and the ability to regulate behaviors, such as binging or lack of control over one’s food choices. In this instance, Willis is likely to have the help of a dietitian and personal trainer to keep himself healthy as these symptoms progress. 

He added: ‘Oftentimes the treatment regimen will change month to month depending on what behaviors or cognitive symptoms.’ 

Establishing a routine that the person can follow and become familiar with is crucial to preventing behavior changes and anxiety.  

Since Willis’ family revealed the actor had been stricken with primary progressive aphasia, an aspect of FTD, the condition is on the public’s radar.

FTD falls under the same wide umbrella of dementias that encompasses Alzheimer’s disease, but it’s far less common, with an estimated 50,000 to 60,000 cases in the US at once, the majority of whom are between 45 and 65 years of age.

Caring for someone with FTD comes with the knowledge that they will never be as they were again. Two years on from his aphasia diagnosis, Willis is not able to speak as he used to in his blockbuster films.

Because there are no treatments to slow the progression of the disease, which causes personality and speech changes over the course of three to five years, care often consists of stimulating the person’s mind while making them as comfortable as possible.

FTD itself does not kill the person who has it. People very rarely die of FTD as opposed to dying with it, Dr Winter added. 

It can weaken the body to the point of being acutely susceptible to illness. Pneumonia is the most common cause of death.

Gait changes are also characteristic of FTD, which can include changes to a person’s motor skills. This vastly increases their risk of falling.

Dr Winter said: ‘It’s troubling that their decision-making is poor, their gait is unsteady, they fall, they break their hip, they go to the hospital, they get an infection, and die.’

People with FTD typically first show emotional and behavioral problems, such as stealing, swearing, inappropriate comments in public, impulsivity, and repetitive behaviors. Many people with the condition are diagnosed early on with mood problems, such as depression and bipolar disorder.

Aphasia is also a major symptom, and there is a specific variant of FTD that includes primary progressive aphasia as a marker of the disease’s progression.

The brain is a complex organ composed of distinct areas that govern a range of different yet specific human functions.

The frontal lobe is heavily involved in behavior and personality. It’s sometimes referred to as the ‘executive center’ because it is responsible for higher cognitive functions, such as problem-solving, planning, and decision-making.

The temporal lobes are on each side of the brain above the ears, which are key for auditory processing and understanding spoken and written language, as well as remembering what words mean, resulting in the progressive loss of the ability to speak.

Those areas are also crucial for interpreting emotion in a person’s voice and face, recognizing faces, and recalling verbal information.

The parietal lobe is toward 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, situated just above the base of the brain, processes what the eyes see. It primarily processes visual information, depth and color perception, form, and motion.