Dementia is on the rise in Switzerland – how disease will change our society
By 2040, 300,000 people will live with dementia in Switzerland. This will change our society in a sustainable way. Like a mountain village, a house with no closed doors and a 51-year-old man just forgetting.
"It's the worst disease there is," says Giuseppe Passoli. “My wife dies a little more each day. And there's nothing we can do.” He says this calmly and calmly at the dining table of the beautiful old St.Gallen building. His wife Elisabeth * sits next to him and looks at her hands. She's 51, a small person with a waking face. She was a perfectionist before, she says. Her organizational talent is probably attributed to her remaining unnoticed for years, says her husband.
He asks his wife to answer the journalist's questions on her own, supplemented where she no longer knows, corrects where she confuses things. Five years ago, he noticed the first changes in it. She, who never forgot anything, seemed more distracted, unfocused. Then the first failures begin the clarifications. The first diagnosis is Burnout. In the fall of 2017, so sure: 49-year-old dementia. In the middle of life, the schedule full of commitments and plans, the daughter only 14 years old. "A disaster of unbelievable size," says Giuseppe Passoli. "My wife forgets who she was, not me."
"I have dementia. Please be patient with me.
Few people suffer from dementia already in Elisabeth Passoli. But the older the higher the risk, among those over 90, almost 40% suffer from some form of dementia, most of them with Alzheimer's. Dementia means "de-spiritualization". Those affected lose orientation – spatially, temporally and socially. In addition, they lose consciousness of their own biography. They are completely dependent on care. Elizabeth still knows who she is, where she lives. She can still shop on her own – but only for Migros, whom she has known for 20 years. At the cash register, she always shows her card. Says, “I have dementia. Please be patient with me.” People would be upset so quickly because of her, she says softly. "In our high-performing society, insane people are like sand in the broadcast, they disturb," says the husband.
154,700 people in Switzerland live with dementia – 20% more than in 2014. We are getting older, as are dementias. By 2040, the Alzheimer Switzerland Association expects in its recently published forecast with nearly 300,000 affected. This will change and challenge our society like no other disease – not just financially. "We can't close all these people and wait for a drug, we have to find a way, as long as people with dementia can remain part of society," says Stephanie Becker, director of the Swiss Alzheimer's Association. "Dementia is not a good disease to be alone." Our society must therefore be conducive to dementia.
To see how this works, you should drive to Central Switzerland, 1000 meters above sea level. Back in Engelberg they know the bakery staff, what to do if the same person wants to buy the same bread four times a day. And the cheese shop owner is trained to deal with older people who like to try cheese but never carry money. Engelberg is one of the first "dementia-friendly communities" in Switzerland. "Which means nothing but philanthropic, and we've always been here," says Theres Meierhofer. The director of the nursing home is a woman with contagious energy. She is the initiator of the project, connects public authorities, trains shopkeepers, distributes fact sheets, talks with police officers. Education work urgently needed.
Only 35% of the population feels well informed about dementia, a recent survey showed. Dealing with dementia still causes a lot of uncertainty. Because dementia is more than forgetting. At certain stages, those affected show major behavioral changes. They become noisy, some aggressive or tearful. The most important thing for a dementia-friendly community, says Meierhofer, is that dementia is not a taboo topic. But something that is also spoken at the regional bank or discussed in school classes – the head of the house has lectured in both places. "People like to help, but they need to know how."
Shame is great, loneliness is the worst
But the shame, the memory itself, the behavior itself can no longer be trusted, which is huge for those involved. Many dare not join people anymore. Guiseppe Passoli knows this shame as a relative. "Neither does Elisabeth see that she is any different." "Elisabeth is still so young, her friends have a hard time adjusting to dementia." They didn't know what to do with her anymore, conversations were getting harder and harder. It would not be long. A walk for example.
Elisabeth Passoli likes to walk. Almost every day she goes around alone. Always the same route at a fast pace. The therapist recommended her. Get out, challenge the brain, don't give up, somehow dominate everyday life. It also means that she sits once a week on the bus and drives to the old freight yard area. Here is the association Mosaik rented. Co-directors Ulla Ahmann and Cristina De Biasio are sitting in a large, bright room. Everything in this temporary use is new, modern and moving. "With our daily structure, we offer people with dementia not in the green field, but in the middle of the city, for life," says Cristina De Biasio. This is where people with dementia belong. Not everyone is very old and completely dependent on help. Dementia is thought in most of the population since the end. It is forgotten that the disease sometimes also begins, creeping, often unnoticed, says the nurse.
Since this summer, the Mosaik Association offers not only discussion groups and walks, but also a daily structure in St.Gallen. People with dementia under 65 or affected at an early stage can now spend days and days in this room. Talking and talking together, cooking, walking, puzzling, caring, but determined. Elisabeth Passoli also comes here once a week. She likes it a lot, she says. She is comfortable with her colleagues. Here she must meet no expectation. It is important that both leaders emphasize that they did not inject this offer to relieve relatives. It is an offer to the affected. "We want to show that you can live with dementia," says Ulla Ahmann. Structured days, offerings that keep the brain and mind awake, contact with other people who can't stop dementia but slow it down are also what experts agree.
Forgetting is one thing, being in good hands feels the other. Two out of three people with dementia are cared for by their relatives in Switzerland at home. A great mental, physical and financial achievement. Because relatives do it for free and therefore carry indirect costs of almost 5.5 billion (see chart). "From a social point of view, it's an advantage if people with mild dementia are cared for at home," writes the Alzheimer Schweiz association. Already with an average dementia, a home is more economical than home care, if we include the free accomplishments of relatives. Petra Knechtli also notes that dementia is treated at home longer and longer. She leads the Sonnweid dementia asylum in Wetzikon. "Often those affected stay at home for a long time until relatives can no longer or patients are in a very reduced state."
Sonnweid is one of Europe's leading centers of dementia competence. Everything is done here to give people with dementia a good life. The first thing that strikes you during a visit: a lot of walking. Off the porch and back, in the garden, to the chicken coop, to the diner, and back. "The desire to change is typical for a certain stage of dementia," says the director. This is why there are wide ramps at home instead of stairs and many open doors instead of closed stations. 1.5 kilometers of protected freedom. If you want to leave the main entrance, you need to know the code, where the freedom stops.
But inside, residents receive the highest possible sovereignty. Mr. K. just got up from his nap on the couch in the hallway. He cuts into the living group's kitchen now "the white stuff" of the pizza. K. used to be a good cook, he doesn't remember, but his hands are still known as chopping. At Sonnweid, 270 staff care for about 160 patients with dementia in various forms of residential care. They do this with visible dedication. "We talk to people, not about them," says Petra Knechtli. "These people have dementia, they forget their own names, like wearing pants, but their feelings, their feelings remain until the end."
In the room of silence and the dead
Conclusion, the end, is an important topic in Sonnweid. The house director takes you to one of the few closed rooms: the Silence Room. A round, almost sacred structure. On the walls, niches are archaic figures of black clay. Each represents a deceased person here, made by himself. 75 numbers are already in the niche for the year 2019. Many residents die within the first twelve months after entry. Dementia itself is not fatal, but favors end-stage infectious diseases. "We are moving to a care facility for people with severe dementia," says Knechtli.
No one knows how long Elisabeth Passoli can live with her husband and daughter at home. "I don't make long-term plans anymore," says the husband. “What Elisabeth can do today, she may not be able to do in a week.” The biggest concern now is that she loses her sight. Dementia has reached the visual center of the brain. But learning to read Braille with a blind stick will not be enough for Elisabeth Passoli to learn. "I can hear audiobooks," she says. She really can't understand her illness anymore. She lives completely in the now. At the end of the conversation, she looks tired. "Have you been here a long time?"
* Name changed
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