They are happy at the association FTD Lotmates with the statement from Bruce Willis’ family. His relatives drew attention yesterday to the disease that the actor suffers from: frontotemporal dementia (FTD), a relatively rare condition with a huge impact on patients and their environment.
“It is great that they are in the news with this,” says Hendrik-Jan van der Waal, chairman of FTD Lotgenoten. “It disappears so often under the table and it is just there. There are many people in the Netherlands who suffer from this and seek help.”
Van der Waal was one of the few in his family who did not get the disease. His grandfather, mother and both brothers were all diagnosed with FTD. “It destroys the whole family. I had a fight with my brother, my parents have split up. A lot has happened. You also often hear of people being fired, having to sell houses. Strange things are happening, while those people just really, really sick.”
That makes it very sad and painful, Van der Waal experienced himself. “You don’t know what you’re fighting against. You think: act normal. And it’s just a disease.”
Someone’s personality can really change 180 degrees, and often they don’t realize it themselves.
More tragically, this form of dementia often strikes people at a relatively young age. The disease manifests itself differently from other forms of dementia, explains Yolande Pijnenburg. She is professor of early onset dementia at AmsterdamUMC and has frequent contact with patients suffering from FTD. The disease is caused by damage to the front parts of the brain, the part that contains the social and moral compass, which is important for a person’s behavior.
One symptom is that people can no longer express themselves properly, but the most striking consequence is that they start to display completely different behaviour. “Someone’s personality can really change 180 degrees”, Pijnenburg knows from experience. “And often they don’t realize it themselves.”
It could be that someone goes from very temperamental to very apathetic. “He then just sits blankly on the couch. But it is also possible that someone will say inappropriate things very uninhibited, suddenly buy a caravan without consultation, or start collecting wood for no reason.”
In the meantime, patients themselves usually do not notice anything, and it is often the partner who brings up the strange behavior with a GP. As a result, it sometimes takes a long time before FTD is diagnosed – if it is diagnosed at all. “There will certainly be cases of FTD that are never diagnosed, for example in the homeless or people in mental institutions.”
At the moment, according to official figures, there are about 10,000 people in the Netherlands who have FTD – although there are probably many more, because many people do not know they have it. That is half to a third of people under 65 who suffer from the disease, but of all dementia patients, including the elderly, the proportion of FTD patients is only 4 to 5 percent.
That smaller share also explains that there is less attention for this variant of dementia, but that lack of attention is not justified, says Pijnenburg. Because those who get it are often still in the middle of life. “The impact is enormous. You get that diagnosis, you can no longer work, your partner often can no longer work either. You are suddenly in a different phase of life and you can hardly do anything.”
There are no treatments that can stop FTD. More research is needed to better understand the disease. However, there is not always enough money for that – a problem that arises more often with relatively rare disorders.
That is why Pijnenburg is also happy that Bruce Willis’ family is now drawing attention to it. “It’s brave that they come out. I hope it helps people who have it to come out themselves. Because you don’t have to be ashamed of it.”
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