"We can now find warning signs 20 years ahead"

Dementia can have many faces. For example that of Simone, who does not want her last name published. At the age of 53 she was diagnosed with suspected Alzheimer's dementia. "I had noticed for a long time that something was wrong," she says.

First there were memory and orientation problems, later language difficulties came along. "Mum doesn't finish a sentence anymore," her son said at the time.

Nevertheless, the diagnosis was a shock for the now 56-year-old. And it was a long way to get there. As a self-employed person, the initial finding was: burnout syndrome. Her doctor advised her to take a break. It wasn't until she went to the neurologist that she found out for sure. "My son cried in the garage for an hour," she recalls.

Simone, who had been married for 33 years, gave up her job at the time. She just couldn't take it anymore, she says. The spokeswoman for the German Alzheimer Society (DAlzG), Susanna Saxl-Reisen, can understand that. Many wanted out of the job because it meant extra pressure. "The diagnosis of dementia is like a black hole that you fall into," says Saxl-Reisen.

It was the same for Simone. In the first few years, she bottomed out, she says. She now lives in rural Brandenburg. She has only been better since last summer. Simone has started learning to play the piano. And Simone loves animals. She has a cat, takes care of alpacas and walks dogs from the shelter.

"Those affected keep telling us how important it is to be active," says Saxl-Reisen. Linda Thienpont, the scientific director of the Alzheimer Research Initiative, also emphasizes that this is exactly the right way to go. However, she advises against so-called brain jogging and crossword puzzles, as they usually only ask for “old knowledge”.

Learning a foreign language or a musical instrument, on the other hand, creates “new knowledge”. Getting to know new people can also help to delay the course of the disease. "Social contacts are very important."

Simone has not given up. "I don't like doing nothing," says the native of Leipzig. A friend got married last year – Simone planned the wedding. “I want to be challenged and not wrapped in cotton wool.” She is also involved with the German Alzheimer Society (DAlzG). "You listen to those affected differently," she explains.

According to the DAlzG, around 1.8 million people with dementia live in Germany. And the number is increasing as a result of demographic changes. More than 100,000 people affected are between 40 and 64 years old.

Even if dementia can occur in all age groups, it is generally a disease of old age, says Mathias Jucker. At a young age, a genetic mutation is almost always the cause of dementia, according to the neuroscientist, who conducts research at the German Center for Neurodegenerative Diseases (DZNE) and at the Hertie Institute for Clinical Brain Research (HIH) in Tübingen.

Although the disease usually begins in middle age, it takes two decades for the first symptoms to be felt. "We can now find warning signs 20 years in advance that someone is likely to develop dementia," says Jucker. However, early diagnoses are not absolutely reliable. Added to this is the hopeless situation: "Who wants to know at the age of 50 that they will have dementia at 70 if there is still no cure?"

Simone would have liked to have known earlier, she says. For a long time she didn't realize what was going on in her head. Once she found herself walking home from work but couldn't remember the route. Today she finds it increasingly difficult to structure her day. A drug helps her concentrate better. And she sleeps a lot. "But I'm not that seriously ill," she says.

You can still live well with the onset of dementia, explains Saxl-Reisen.

According to the DAlzG, symptoms of dementia begin insidiously. The first warning signs were usually problems with memory and orientation. For example, people with the onset of dementia have difficulties with familiar tasks or are no longer able to follow conversations in a group. It is also said that noticeable changes in mood or behavior could be at the beginning of dementia. In the later course, memories of the long-term memory also disappear. Those affected lose more and more of the skills they have acquired during their lifetime.

Risk factors for dementia include high blood pressure, obesity and diabetes, wrote an international research group in 2020 in the journal The Lancet. A possible risk could also be lack of sleep, says Thienpont. "Sleep is like a cleansing process for the brain," she explains. Little sleep may have contributed to her illness, says Simone, who slept four hours or less for a long time. But her grandmother also suffered from Alzheimer's dementia.

Maren Ewald heads the StattHaus, a care and counseling center for dementia patients in Offenbach, Hesse. "People with dementia initially grieve for themselves. They find themselves losing themselves," she says.

The “StattHaus” includes a flat-sharing community for elderly people with dementia, as well as a public cafeteria with a garden. Two to three so-called young people under the age of 65 are currently coming to day care. Ewald's father, who used to be a judge, was also affected early on. He was diagnosed at the age of 57. “Who thinks about dementia at the age of 50?” she says. The illness affected the whole family. "My mother was completely overwhelmed, but didn't want to bring him into the home."

Dementia cannot be cured. The state of research varies depending on the variant, says Jucker. "We know a lot more about Alzheimer's than about other forms of dementia." Alzheimer's is the most common form of dementia. Over time, more and more brain cells die. Vascular dementia, Lewy body dementia and frontotemporal dementia are also common.

Finding out more about these forms of dementia requires "more money, more research and staying power," says Jucker. “We want to intervene when those affected are not yet aware of their dementia. Not just when it's too late."

Four drugs have been approved in Germany for Alzheimer's that could delay the course of the disease, says Thienpont. At the beginning of the year, the antibody lecanemab was provisionally approved in the USA. The drug is not without controversy because it had side effects such as brain swelling and bleeding in the brain. In addition, the magazine "Science" reported last December that there may have been three deaths in connection with the therapy.

Alzheimer's is characterized by deposits of proteins in the brain years before the first symptoms appear. The antibody lecanemab is designed to capture the amyloid-beta protein in the patient's brain, which is deposited in such plaques, and thus slow down the progression of the disease somewhat. Thienpont hopes the drug's benefits will outweigh its risks.

Approval for the antibody has also been applied for in Europe. "I think there will be a decision by the end of the year," says the expert. Due to the possible side effects such as brain swelling, regular MRI examinations are important.

Simone doesn't think much of the new drug - also because of the reports of deaths. Even without lecanemab she is fine, she says. Simone used to love to laugh a lot. "First I wanted to play it for my family, but now I can do it again."

She does not want to accept an average life expectancy of seven to eight years after diagnosis. Thienpont emphasizes that the range of life expectancy is very large - from two to 20 years. "I don't let myself be dragged down," says Simone. "I want to enjoy my life for as long as possible."

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