Almost a year ago, Bruce Willis ended his acting career. Not because he wanted, because he had to. In spring 2022, it was revealed that the action star had been diagnosed with aphasia, which is affecting his cognitive abilities (read more here). Now the family explained that the disease had progressed. There is now an accurate diagnosis. Accordingly, the actor suffers from frontotemporal dementia. These are the most important facts about the rare disease.

What is frontotemporal dementia?

This is a rare but progressive form of dementia. In frontotemporal dementia, nerve cells die. The nerve cells in the forehead and temples are primarily affected. This is the area of ​​the brain in which, according to the German Alzheimer Society, emotions and social behavior are controlled, among other things.

How is this dementia manifested?

Changes in personality, but also in interpersonal behavior accompany almost all patients in the early stages of the disease. At first, this often manifests itself in a kind of laziness. Those affected are becoming more and more superficial, careless, but also thoughtless. They are more irritable, sometimes aggressive and increasingly tactless in social interactions. In addition, they lose their motivation, they no longer feel like their hobbies and they also lose interest in everything else.

Some no longer care about their hygiene, others have constant cravings. As the disease progresses, language disorders are typical – word-finding, naming and language comprehension disorders. The sick speak less and less, in the worst case they fall silent completely. Later there is limited memory performance, and movement disorders are also possible. Complete need for care in the final stage is possible.

At what age do you usually get sick?

As a rule, frontotemporal dementia begins between the ages of 45 and 65. However, the disease can also break out much earlier – between the ages of 20 and 85.

How many people are affected by frontotemporal dementia?

At the end of 2021, around 1.8 million people in Germany were suffering from dementia. About one in ten people with dementia has frontotemporal dementia. The German Center for Neurodegerative Diseases (DZNE) knows that around 10 to 15 percent of the disease is genetic. Women and men are equally affected.

Why is it so difficult to diagnose this form of dementia?

A person changes, is suddenly boorish, socially difficult - many don't think of dementia with such personality changes. Due to the symptoms in the early stages of the disease, frontotemporal dementia is often confused with mental disorders. This includes burn-out, but also depression, up to schizophrenia and mania.

How is the disease treated?

A cure is not yet possible. It has not yet been sufficiently clarified why the nerve cells die off. Drugs have been and are being tested in studies, but so far there is no targeted treatment option. Instead, the psychological effects of the disease, i.e. the behavioral problems, are usually treated. Among other things, antidepressants are used, which regulate moods and alleviate listlessness. Exercise and creativity can also help. However, the patients usually do not realize that they are ill and therefore do not want to be treated.

What is known about the duration of illness in frontotemporal dementia?

According to the German Alzheimer Society, the average duration of the disease from the first symptoms to death is eight years. However, this is an average time. There are patients who live with this form of dementia for another 15 years, in others the disease progresses more quickly and lasts only two years.

How does the disease affect family members?

If a person suffers from frontotemporal dementia, it is usually extremely difficult to get along with them. Relatives find themselves exposed to unpleasant traits such as aggression, unpredictability and a lack of empathy. It is also stressful for those close to you that the relationship with the sick person changes because they increasingly lose interest in their counterpart.

Source: German Alzheimer Society, DZNE, MSD Manual