Bruce Willis, 67, diagnosed with 'cruel' form of dementia: What is frontotemporal dementia?

'Die Hard' actor Bruce Willis was diagnosed with frontotemporal dementia — what to know about the rare and 'cruel' disease.

bruce willis wearing black tuxedo and white shirt smiling on red carpet, Bruce Willis has been diagnosed with frontotemporal dementia (FTD), his loved ones announced
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Bruce Willis has been diagnosed with frontotemporal dementia (FTD), his loved ones announced on Thursday.

In a statement, his family shared that the 67-year-old actor's condition has worsened since he was diagnosed with aphasia last year.

"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 (known as FTD)," they shared.

"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."

"FTD is a cruel disease that many of us have never heard of and can strike anyone," the family shared.

The statement was posted by Bruce's wife, Emma Willis, ex-wife Demi Moore, and the Die Hard actor's five daughters: Rumer, Scout, Tallulah, Evelyn and Mabel.

"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."

Read on to learn more about frontotemporal dementia, as well as its symptoms, risks and treatment.

What is frontotemporal dementia, the disease that Bruce Willis has?

Frontotemporal dementia is an umbrella term for a group of rare disorders that affect the frontal and temporal lobes of the brain — the regions associated with personality, language, movement and behaviour.

Diagnoses of FTD are rare. Researchers estimate cases of frontotemporal dementia make up just 5 to 10 per cent of all dementia cases. However, unlike other forms of dementia, FTD tends to be diagnosed earlier in life. Alzheimer's Disease mainly affects people aged 65 and older, whereas FTD symptoms can present between 40 and 65. When symptoms of dementia start before age 65 (known as young onset dementia), approximately 1 in 5 cases are frontotemporal dementia.

Dementia vs. Alzheimer's Disease: What is the difference?

Dementia is an umbrella term that describes a set of symptoms affecting brain function. Alzheimer's is a specific disease and the most common cause of dementia, accounting for 60 to 80 per cent of dementia cases. Vascular dementia, frontotemporal dementia and Lewy body dementia constitute other common types.

While dementia describes a group of symptoms associated with a decline in memory, planning, language and judgement, Alzheimer's is a "degenerative brain disease that is caused by complex brain changes following cell damage," according to the Alzheimer's Association.

Alzheimer's disease tends to impact most of the brain whereas frontotemporal dementia primarily affects the frontal and temporal lobes.

Changes in personality and behaviour are often noted in the early stages of FTD as these regions deal with language, memory and processing emotions.

illustration of the brain, 4 sides of the brain indicating frontal lobe, temporal lobe, parietal lobe, occipital lobe and cerebellum
Frontotemporal dementia (FTD) impacts the frontal and temporal lobes, marked by the pink and orange (Getty).

Signs & symptoms of frontotemporal dementia

Symptoms of FTD vary from person to person, depending on the areas of the brain affected.

Damage to nerve cells in the frontal and temporal lobes can limit interactions with other parts of the brain, often presenting as changes in behaviour, personality, movement and communication. A person with FTD may also experience language difficulties, known as primary progressive aphasia. Bruce Willis was diagnosed with aphasia last year, ending his acting career.

In addition to behavioural and personality changes, symptoms of FTD may include:

  • Difficulties with speech

  • Memory loss

  • Withdrawn or disinhibited behaviour

  • Becoming easily distracted or repeating the same actions continuously

  • Overeating or drastic changes in food preference

  • Incontinence

Personality changes are more apparent in the early stages of FTD, with memory decline often not arising until its later stages.

close up photo of brain scans
Dementia a chronic condition that gets more severe over time (Getty).

Who is at risk of dementia?

Frontotemporal dementia is caused by a buildup of proteins that form clumps inside brain cells, eventually causing them to die. Researchers don't fully understand why this happens; however, there is often a genetic link to developing FTD.

Approximately 1 in 8 people diagnosed with FTD have relatives with the same condition, according to the NHS. Outside of family history, there are no known causes of frontotemporal dementia.

Additionally, new research suggests a possible link between dementia rates and gender inequality. Worldwide, more women are affected by dementia than men, and gender-based social and economic disadvantages may be to blame. In Canada, nearly 62 per cent of those living with dementia in 2020 were women.

Is there a cure for dementia?

Sadly, there is no cure for frontotemporal dementia or other forms of dementia. Still, some treatments may help ease symptoms and improve quality of life, including the use of speech and language therapists and physiotherapists.

As FTD affects different areas of the brain than Alzheimer's disease, available dementia medications do not work for the treatment of frontotemporal dementia.

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