Being open-minded counteracts the stigma

It started insidiously: Bruce Willis found it increasingly difficult to remember his lines while filming. The film crews came up with solutions. His dialogues have been shortened, someone whispered the most important lines to the Hollywood star through a small receiver in his ear. But it kept getting worse. Willis is said to have made incomprehensible noises and fired guns in the wrong direction during filming – although fortunately they were only loaded with blanks.

Initially, only aphasia was found in Willis, an incipient loss of speech. As has now become known, this was only the first Symptom of frontotemporal dementia (FTD). FTD is a comparatively rare form of dementia. According to estimates by the German Alzheimer Society, it accounts for around 3 to 9 percent of dementia diseases. As with Alzheimer’s dementia, nerve cells in the brain are destroyed.

A distinctive feature of the FTD is that above all the front areas of the brain are affected, the regulate social behavior and emotion control. Typical early symptoms are therefore not only speech disorders, but often also personality changes. Sick people appear listless and indifferent or irritable and aggressive to those around them. Because control of social behavior is impaired in the affected brain regions, people with FTD lose inhibitions and often behave shamelessly and tactlessly in the eyes of others. in one Forum Relatives report that those affected, for example, devour large amounts of sweets or behave in a sexually uninhibited manner. Only as the disease progresses does memory become increasingly lost. As with other forms of dementia, the final stage can lead to bedridden and a complete need for care.

Open communication counteracts stigma

Another special feature of FTD: It occurs earlier than other forms of dementia, most of those affected are between 50 and 60 years old when the disease breaks out. Bruce Willis recently turned 68. A video shows him celebrating with his family, with Willis looking happy and content and blowing out the candles on his cake. His relatives now shield the star from direct contact with the public: At the same time, they communicate openly about Willis’ condition and his illness. And we are not silent about the difficulties that dementia poses to relatives and friends.

I’m having a crisis!

It surrounds us, it scares us, it paralyzes us: the crisis. Even in the very personal there is always a phase in which not everything is good. But maybe that’s the way things are going – and no reason to use the word in such an inflationary way?

“Today is my husband’s birthday and I started the day crying,” Willis’ wife Emma Heming Willis said in a video message, adding, “I just think it’s important that you see all sides of this.” but “no choice” but to be strong. “I wish I had her, but I’m also raising two kids,” said Heming Willis. The couple have two daughters together, aged ten and eight.

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The American dementia expert Brad Dickerson had praised the behavior of Willis’ family in the American media: Openness in dealing with the disease is important: “It is crucial that someone like Bruce Willis and his family address the issue, because any type of dementia There’s still a lot of stigma attached to it,” Dickerson said.

Victims are more likely to seek help

According to estimates by the German Alzheimer Society, around 1.8 million people in Germany are currently suffering from dementia. By 2050, their number could rise to 2.4 or 2.8 million. “These are only forecasts, but in any case the number will increase, if only because of demographic change,” says René Thyrian. The professor for interventional health services research is a board member of the German Alzheimer Society and works at the German Center for Neurodegenerative Diseases in Rostock and Greifswald. However, it can take time before those affected receive a diagnosis. “It is still the case that dementia is very strongly stigmatized. That’s a problem, because because of that, it can take a long, long time for someone to go to the doctor or confide in those around them.”

In the last ten years, however, things have also changed for the better, says Thyrian. And the open handling of celebrities with their diseases contributed to this. “It helps to counteract the stigmatization.” Bruce Willis’ FTD or the Alzheimer’s dementia of the late football manager Rudi Assauer brought the topic to the public: “People then realize: It can hit one of us.” Til-Schweiger too The film “Honig im Kopf”, which deals with the topic of dementia, has changed the consciousness of many people. Taboos in dealing with the disease are also broken, for example, when celebrities write about their parents’ illness in books.

The more openly a society deals with the topic, the better it is for relatives – and for those affected, believes Thyrian. “People are now losing their shyness a little more and are increasingly seeking help with cognitive memory disorders. In the meantime, people come a little earlier,” says the care researcher. Above all, patients under the age of 65 who are still working would often have kept their impairment a secret for as long as possible. That’s different now.

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A good diagnosis is important in order to recognize whether memory loss is a “neurodegenerative” form of dementia, which is caused by the death of nerve cells in the brain. This is the case with 80 percent of all dementia diseases. The most common form of neurodegenerative dementia is Alzheimer’s disease, which in turn accounts for around 70 percent of these diseases, but FDT is also one of them. However, memory disorders can also have other causes: They can be caused by a vitamin deficiency, by inflammation and circulatory disorders in the brain, can be the result of sleep disorders or occur as a side effect of medication. In these cases, they can often be treated quickly and effectively.

Several methods are combined to make the diagnosis: neuropsychological tests, brain scans, blood tests and an examination of the cerebrospinal fluid. For example, changes in certain proteins, the tau proteins, can be observed in the cerebrospinal fluid in Alzheimer’s dementia and FTD. The imaging methods in particular have gotten much better in recent years, says health care researcher Thyrian. Both advances in medicine and the fact that those affected are more likely to seek help have led to dementia being recognized earlier and earlier. “This is important, because it has been proven that an early diagnosis means that those affected can be better cared for,” says Thyrian. Many of them are multimorbid, i.e. suffer from several diseases at the same time. “The fact that they are cognitively impaired can then be better addressed during treatment. Hospital stays, for example, are known to place a much greater burden on people with dementia. If the diagnosis is known, you can try to treat it at home.” General anesthesia is also a particular risk for people with dementia that needs to be carefully considered. “This can trigger a flare-up in those affected,” says Thyrian.

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Early diagnosis provides clarity

Another important advantage: If you find out early on that you are suffering from Alzheimer’s or another form of neurodegenerative dementia, you can take care of all important matters in good time. The sooner someone knows that they have dementia, the more time they have to organize help if they need care, to prepare a power of attorney, living will and will. “It’s better to take care of these things now than later in a crisis situation,” says Thyrian. Last but not least, with a timely diagnosis, an attempt can be made to positively influence the course with medication. Neurodegenerative forms of dementia are still considered incurable. Thyrian also does not believe that there will be a drug in the next few years that is effective in all forms of dementia. Even now, however, it is at least possible to stop the progression somewhat if therapy is started at an early stage.

The journalist and author Peggy Elfmann reports in her blog “Alzheimer und wir” about her mother’s Alzheimer’s disease and has written a guide for relatives of people with dementia. She also thinks it is important to have a suspicion clarified at an early stage. On the one hand, an early diagnosis provides clarity, says Elfmann: “In the time before that, you’re usually not really carefree, but you notice that some things don’t work the way they used to. It also makes it possible to actively take things into your own hands and to clarify important questions such as: How do I want to grow old? How would I like to be cared for?”

Not every home is the same

In most cases, relatives cannot provide long-term care, simply because they are often the same age. Children, on the other hand, are often not on site and care is still difficult to combine with a job. This means that sooner or later many people with dementia will be cared for in homes. This is exactly what scares many people and is perhaps one of the reasons why some still prefer to delay the diagnosis of dementia.

It is also true that in many homes there is not adequate care and, above all, “they are calmed down” with medication, if only because there is a lack of staff, according to health care researcher Thyrian. But there are also other examples and homes in which well-trained nursing staff with a good caregiver key can better respond to the needs of dementia sufferers. And alternative offers such as dementia flat shares, where those affected can also be cared for if they need care. “There may not yet be enough such offers and the waiting lists are often long, but I assume that offers for senior-friendly housing will increase,” says Thyrian.

Author Elfmann also criticizes that there are too few staff in nursing. Politicians must act here. “Of course there are differences between the homes. That’s why you shouldn’t put off the thought of accommodation in a home, but start getting information and looking at facilities or finding out about alternatives such as dementia flat shares at an early stage.” Ideally, those affected can be involved themselves. When it comes to dementia, you always immediately have the image of the final stage in your mind, says Elfmann. “But after the diagnosis, people often live for many years, during which they want to actively participate in decision-making and should of course do so.”

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