Dementia is a disease associated with old age. It mainly affects the elderly, experts say, but dementia or Alzheimer’s may occur at a younger age. “We estimate that there are 25,000 people under the age of 65 suffering from dementia,” Susanna Saxl-Raisen of the German Alzheimer’s Society told the German news agency Deutsche Welle. “The issue is not widely known in German society,” he says, noting that there are few treatment and support programs for younger people.
At StattHaus, a special center for people with dementia in Offenbach, cases of younger people with dementia are becoming more common. “They are still perceived as isolated incidents,” notes Tania Doubas, an employee at the center. As he typically states, in the case of younger patients the big problem is that dementia comes just in the middle of their life. In fact, the relatives are in a particularly difficult position: a salary is lost, it is necessary for a nurse to come home, while it is very likely that the children have not yet left their parents.
The heavy burden of relatives
The director of the StattHaus center, Maren Ewald, was also the daughter of a parent with dementia. “I can understand the anger of relatives,” he says characteristically. In fact, as he adds, recently the patient’s wife was in an extremely difficult situation, she had just lost her job, the loan was running and she also had to take care of her sick husband.
Ewald’s father was diagnosed with dementia at the age of 57. She now advises the relatives of the new patients not to wait long until they make the decision for their treatment. “Many families are falling apart because of the excessive demands that such a situation entails,” he notes.
When is it talked about dementia in younger people?
According to experts, this particular form of dementia occurs in people under 65 years of age. However, cases of patients around 40 or earlier have been reported. “I know a case of a woman in whom dementia started in the early 20s and a man who got sick in the middle of the same decade. “But these are extremely rare cases.”
In the specialized center of Offenbach, however, care is offered in such cases as well. On average, it takes two to three years for a complete diagnosis. Sachs-Riesen notes that very often at younger ages doctors initially misdiagnose that it is either overwork or depression.
“The first three years are very difficult for patients because they understand that they are losing themselves. He is in despair. “They feel better in the middle stage of the disease, and then comes the final, where they no longer remember.”
Oscar Seifert from Hamburg knows very well what it is like to live with a father who has dementia. His father was diagnosed with dementia at the age of 54, while he was only 15 years old. In fact, he has written a book entitled “The privilege of having a sick father”. There he describes all the stages of the disease, the difficulties and frustrations in everyday life. But it also gives an optimistic aspect: how the disease changed his relationship with his sick father but also with his mother and siblings. “We learned what unconditional family cohesion means, something caused by my father’s illness.” As he typically says, the biggest bet is to keep a family together under these conditions. Otherwise the disease wins.
DW
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