Helmut looks after his wife Cecilia, who has dementia. But then he too is diagnosed with the disease. The two face a difficult future, but they don’t give up. Their hope also rests on a dementia day clinic in Munich. A site visit.
A woman and a man walk through Munich’s drizzly weather to a clinic where she has forgotten what she wants there, and he knows he may soon forget it.
Cecilia and Helmut Weber* visit the neurological day clinic for dementia at the Schön Klinik Schwabing in Munich. The two want to be examined and treated here for at least 20 days. Cecilia has been suffering from dementia for three years. Helmut takes care of her. But a year ago he noticed his own memory problems. And a doctor made the same diagnosis.
Helmut and Cecilia are sitting at a round wooden table in a bright clinic meeting room. Helmut, wearing dark trousers and a blue-red checkered shirt, spreads his arms wide. “We have a big table full of papers in our apartment,” he says. On it: dates, places and times. “Sometimes we also puzzle over what was meant by one,” he says and laughs. He leans forward and strokes the breast pocket of his shirt. A glasses case and a pack of yellowish-transparent pills peek out from it. “And I have terrible handwriting. Without my wife as an eye, it wouldn’t work any more anyway.” He smiles at her. Wrinkles form around his alert blue eyes. Cecilia puts her hands over her mouth and giggles. “I remind him often,” she emphasizes.
The two met late in life, when they were already over 60. She, the chic Munich woman, and he, the doctor of science, traveled a lot. They say they drive to Lake Tegernsee or Starnberg in their blue convertible. To South Tyrol for hiking or to the sea in France. “We have friends everywhere,” says Helmut. “Or had.” Helmut is 89 years old, his wife is a few years younger.
The convertible is history. Instead of South Tyrol and France, today we’re taking the tram to a Munich park. The two then share a large shandy in the beer garden. “And Helmut eats chicken with it, he likes it,” says Cecilia. The two give each other a happy look. Life is still beautiful, they both think. “Even if the doctor’s appointments pretty much dictate the calendar,” adds Helmut and shrugs his shoulders.
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It was three or four years ago when he suddenly noticed small changes in his Cecilia. “She repeated things or suddenly didn’t really know things anymore.” She watches him with slightly narrowed eyes as he says this, adjusts her handbag on her lap and inspects the contents. Black umbrella, paper documents, glasses case. She looks up as he continues. “But I’m not a doctor. I don’t know what’s age-related and what the protein molecules in the nerve pathways are hindering.” However, a specialist also confirmed Cecilia’s dementia diagnosis.
About a year ago, Helmut noticed his first symptoms. “Things that I always knew suddenly disappeared.” Well-known street names or the first name of an acquaintance, for example. “It started slowly,” he says. “Then I’m going to the doctor.” The diagnosis wasn’t a shock. “But it annoys me when I forget things. It makes me angry.” He raises his bushy white eyebrows. He usually remembers it later. He looks at Cecilia. “Or my wife reminds me.”
Things are different with well-known knowledge or memories from the past. They are still very present. For Helmut it’s science. “People used to think that matter consisted of the so-called indivisibles, the atoms,” he begins, transforming himself from an 89-year-old pensioner into a lecturer who, with waving hands, explains the interaction between protons, neutrons and electrons for minutes.
Helmut and Cecilia showed “classic initial symptoms,” explains Jürgen Herzog, neurologist and chief physician of the dementia day clinic. He is a tall, slim man in his mid-50s. With a bald head, beard, modern glasses and permanent smile, he looks more like a former professional athlete than a neurologist who deals with one of the most insidious diseases on a daily basis.
He cites small gaps in memory, initial difficulties with orientation, and an impoverishment of language as examples. With Cecilia it shows itself in the mostly short, simple sentences. In Helmut’s case, he used rather antiquated language; sometimes he lacked words and struggled to find them.
Herzog knows that the senior wrote an excellent exam and was then very successful as a manager for a long time. “A man who carried people away,” says the chief physician, “just with the power of his conviction and his mental logic.” You can tell that things are slowly getting to the point. “But something always comes through.”
“This way.” Herzog points to a small staircase. He wants to show the two of them the day clinic. “Would you like to get involved?” asks Helmut. “No, it’s okay,” Cecilia replies. Then again just before the stairs: “Don’t you want to hang up now?” She stops, grips her handbag tighter: “Helmut, I’m not disabled!”
Duke opens the door. Bright light, a counter with a colorful bouquet of flowers behind which a nurse sits. On the walls, also in the room, actually everywhere: Munich motifs. A blue and white striped maypole, a “Viktualienmarkt” street sign, a photo of a girl and a boy in traditional costume with pretzels in their hands. “And do you recognize them?” asks Herzog, pointing to a large picture that shows Munich city center, the silhouette of the towers of the Frauenkirche towering above everything. “Are you asking a real Munich resident that?” asks Helmut, dismayed. Then he smiles knowingly. Cecilia also giggles. “That’s obvious.”
Only at second glance does the dementia strategy behind the room design become clear. The Munich motifs are intended to give patients a feeling of home and security, very bright light helps with orientation and easy-to-understand picture symbols on all doors reveal what is hidden behind them. There are also hidden security measures. The windows can be closed tightly and the exit is covered with a film made of ivy tendrils. This is intended to prevent patients from simply leaving the day clinic and possibly getting lost.
People with mild to moderate dementia usually come to Herzog’s day clinic for a period of three to six weeks. Medical-therapeutic treatment includes diagnostic procedures, medication adjustment, but also memory, conversation and music therapies. Herzog calls it “resource-enhancing therapies.” Routines and fixed daily structures should also be practiced. The examinations and therapies take place every hour and lunch is always at the same time. “Because everything that is routine and where you don’t have to think about it is usually remembered.”
After just two days, Herzog noticed an improvement in many patients. “In many cases we can significantly improve, and sometimes even restore, independence in everyday life,” he says. Nurses, therapists and doctors constantly challenge their patients. “They reach their cognitive limits. It’s very tiring, but it shows that many people still have resources.” Last year alone, almost 300 patients were treated in the clinic.
But dementia is currently incurable and the disease cannot yet be stopped. So doctors, together with social workers and relatives, also discuss future matters – potential care, moving into a home or living wills.
Herzog continues to lead Helmut and Cecilia through the day clinic. To the left, along the corridor to the kitchen and a lounge, where the shelves are piled up with games, such as “Memory” and various puzzles. There is a doctor’s room and a relaxation room. To the right is the therapy room. Guitar sounds and quiet singing come from one of them. Herzog points to the closed door. “There’s music therapy going on right now.” Helmut and Cecilia listen, but no song can be recognized yet.
In the room, the music therapist with a brown ponytail and a beaming smile leans over her guitar. Four women and two men sit in a circle of chairs. A man with a mustache waits motionless, a woman with a colorful felt bead necklace moves forward in her chair.
“The cuckoo and the donkey had a fight,” intones the therapist. The woman in the felt necklace is already singing along, and after the first two lines most of the others join in. “Who would sing best, who would sing best?” The man with the mustache also sings in a quiet, deep voice, his eyes fixed forward, his expression still motionless. “Cuckoo, cuckoo, ah. Cuckoo, cuckoo, iah.” An older lady doesn’t stop, keeps singing. “Cuckoo, cuckoo, cuckoo, cuckoo.” The therapist nods at her. “Yes, we both always do the cuckoo, exactly, very well.”
Then everyone should stretch out, yawn and shake themselves out. “Then they can open their arms wide, like an eagle. And then you hug each other, very tightly.” A woman with a short gray haircut reaches for the hand of the person sitting next to her. “Such a coincidence, you two, our dream team,” comments the therapist. The two laugh, almost mischievously.
As it becomes quieter again, an older lady suddenly whispers to the therapist: “I love you.” Then she turns to the left. “And you too.” She grins, winks several times, wrinkles appear around her blue-gray eyes. Then she points her finger around the circle of chairs, at each individual. “I love you all.”
Outside, Herzog goes back to reception with Helmut and Cecilia. The case of the two is challenging, emphasizes the chief physician. Because Helmut, as a caring relative, is now also a patient. “He won’t be able to take care of her long-term,” he predicts. Talking about future measures will probably not be easy.
The scientist has another hope. He wants to go to the day clinic to stop the progression of the disease or at least slow it down significantly. With medication or other preventative measures, he says. “Something new is constantly being discovered in research. Recently it came to ‘Knowledge before eight’.”
The disease cannot yet be stopped. But it has been proven that therapies, routines and, last but not least, medication can alleviate the symptoms. The latest hope is the drug Lecanemab, which has already been approved in the USA. Herzog also thinks highly of the drug. He estimates that approval for Germany could follow this year.
“And could you imagine spending a little time here?” asks Duke Cecilia at the end of the tour. She shrugs her shoulders slightly and smiles cautiously. Helmut puts his hand on the back of her neck, nods and laughs encouragingly. “It doesn’t sound bad,” she then says. The two say goodbye. As she leaves, the chic Munich woman doesn’t yet link arms with her scientist.
*Names changed, known to the editors
