Hollywood star Bruce Willis suffers from frontotemporal dementia. What is behind the disease? An expert explains.
Hollywood star Bruce Willis (67) suffers from frontotemporal dementia. That’s what his family said on Friday (February 17) announced in a joint statement. According to the family, the star’s health has recently deteriorated. What is behind the diagnosis? In an interview with the news agency spot on news, neuroscientist Dr. Boris Nikolai Konrad on how the disease affects those affected. In addition, the memory world champion and author of “Everything is only in my head – the secrets of our brain” reveals which measures can strengthen the brain in the prevention of dementia.
Hollywood star Bruce Willis has frontotemporal dementia. What exactly is behind this disease and how does it affect those affected?
dr Boris Nikolai Konrad: Frontotemporal dementia is a rather rare form of dementia. It results from damage to the brain, specifically, as the name suggests, in the frontal and temporal lobes. These brain regions lie just behind the forehead and are very important for our personality, language, movement and consciousness, among other things.
It is therefore a neurodegenerative disease, which means that nerve cells there die as a result of the disease. Depending on the function of these brain regions, symptoms of frontotemporal dementia include behavioral changes, language difficulties, and problems with planning and completing tasks. In the advanced stage, it can lead to restricted mobility, ultimately to the need for care and death.
Last year it was announced that Willis suffers from aphasia. How are these two diagnoses related?
dr Konrad: Aphasia, i.e. severe speech disorders, is a common symptom of this dementia. It is very likely that these diagnoses in Mr. Willis are closely related. There are sub-types of frontotemporal dementia. The so-called “primary, progressive aphasia”, in which the damage to the temporal lobe near the ears, which is important for speech, is most severe, is one of these forms. Aphasia can have various causes, and it is common in this form of dementia.
Does the disease have a typical course and are there any treatment options?
dr Konrad: As with almost all diseases, especially those of the brain, the individual course of frontotemporal dementia can vary. However, a typical course can already be described. Changes in social behavior and motor problems follow early symptoms such as speech disorders or behavioral changes, which are often initially mistaken for depression or the like.
Because the prefrontal cortex, which is so important for personality and strategic thinking, is often affected, those affected often lack insight even after a diagnosis. They often recognize the symptoms less than their fellow human beings.
Unfortunately, no cure is known to this day. Treatment and therapy forms therefore serve to slow down the course and aim at a longer participation in life. With increasing language problems and behavioral disorders, usually to the point of complete loss of communication skills, independence is lost and intensive, daily care becomes necessary. With all due caution, based purely on the accounts of family members on social media, it suggests that this is already the case with Mr Willis.
Are there other early signs to watch out for?
dr Konrad: Word-finding problems, changes in emotional behavior or social behavior that does not match personality can be the first signs.
But what is important is that these first symptoms are often non-specific. Of course we all have days when we are less concentrated or impulsive or when we are looking for a word that we actually know. However, if this increases, especially between the ages of 40 and 60, when it is less typical of age than 20 to 30 years later, it is highly recommended to visit a doctor or a memory clinic with relatives. There can be many possible reasons, some are also treatable other than this form of dementia, so there should not be any false shyness! We go to the clinic with a broken arm.
Do you have any tips for family members on how to deal with a family member who has this condition?
dr Konrad: As with all forms of dementia, it can be very challenging for relatives. Especially when the person concerned lacks insight. Even if it is difficult, patience is certainly important. Arguing, accusing the person involved of making mistakes, only stresses both sides.
The first time may be under the sign of providing help. Symptoms are not so advanced that intensive care is needed or possible, but help is needed where it was not previously available. And then, and especially then, relatives should accept help themselves! For example from the environment or in groups of relatives. If it is not offered, please ask for it yourself instead of thinking that you have to do everything yourself.
As far as memory and illness are concerned, it is also important: happy to help, but don’t lose everything! Remembering becomes more difficult, words cannot be found. Searching (and finding) the words is also training for the brain. If the answer is always given immediately, without the person concerned being “allowed” to think, that is not good for the course either.
Bruce Willis is 67 years old. Is that a typical age for such a diagnosis? In general, are there groups of people who are particularly susceptible to developing FDT or can it affect anyone?
dr Konrad: The first symptoms usually appear between the ages of 40 and 65. So for dementia a rather young age. So Mr. Willis is a case in point. In principle, unfortunately, it can probably happen to anyone. There is a genetic component: If you have one or more relatives with FDT, you are also at a slightly higher risk. But the majority of those affected have no (known) cases in their family.
Lifestyle factors that apply to other diseases are also evident in FDT. According to some studies, people who already suffer from diabetes or high blood pressure, are overweight or smoke also have a higher risk, although the study situation is not clear and it is probably somewhat less relevant in FDT compared to other forms of dementia.
Which measures specifically help to prevent dementia? For a long time it was said that a daily crossword puzzle or Sudoku could prevent dementia. Do such resources really do anything?
dr Konrad: So far there are no measures that have been proven to protect against dementia. Reducing the risk factors is therefore important. No smoking, enough exercise and a healthy diet are of course also good here. Memory training is highly recommended as part of prevention! What sounds contradictory is not: memory training cannot prevent the disease. But it can delay or postpone symptoms, in the best case by years!
The scientific model for this is the cognitive reserve. In the case of dementia diseases such as FTD, for example, it is shown that people with a high level of education or professions that are particularly demanding in terms of mental performance supposedly develop the disease later. What is more likely: They get sick just as young, but the cognitive reserve is so high that it is noticed much later.
And with timely memory training, i.e. before the onset of the disease, it can also be formed. Therefore, as in my book “More space in the brain”, I strongly advise you to consciously train your brain and not just your body. For example: It seems to be particularly helpful when doing mentally challenging activities. Sudoku or crosswords can help as long as they are challenging.
To put it bluntly: Anyone who has been solving the puzzles in the same magazine by the same puzzle author at the same table for years – and still manages to do it half asleep because all the questions have already been answered 20 times – can no longer help themselves.
Anyone who consciously tackles other tasks or trains their brain with memory techniques such as the memory palace can always bring themselves exactly into the optimal area where it is difficult but still feasible. And doing the best we currently have in terms of active dementia prevention. Even if the illness can unfortunately still affect you, a lot of quality of life and healthy time is gained.
What does it mean when a superstar goes public with such a diagnosis?
dr Konrad: Attention first, of course. More people wondering if their loved ones are showing more memory loss than is typical for their age. More interest in prevention. I am impressed by the way Mr. Willis’ family has communicated so far. Honest and not euphemistic, emotional, personal, but also loving and even grateful. I hope that this can also give strength to other relatives and those affected.