Dementia is on the rise in Switzerland – because disease will change our society
By 2040, 300,000 people will live with dementia in Switzerland. It will change our society sustainably. Like a village in the mountains, a home without doors and a 51-year-old just forgetting.
"It is the worst disease that exists," says Usuzepe Pasoli. "My mom dies a little more every day. And there is nothing we can do. "He says it calmly and calmly at the dining table in the beautiful old building of St. Gallen. His wife Elizabeth * sits next to him and looks into his arms. She is 51 years old, a petty person with a watchful face. She used to be a perfectionist, she says. Her organizational talent is probably ascribed to her being undiscovered for years, her husband says.
He has his wife independently answer the questions of the journalist, supplemented where she no longer knows, corrects where she mixes things up. Five years ago he noticed the first changes in it. She, who never forgot anything, seemed more distracted, defocused. Then begin the first failures, clarifications. The first diagnosis is burns. In autumn 2017 then certainty: dementia with 49 years. A middle life, an agenda full of meetings and plans, her daughter is only 14 years old. "A disaster of incredible magnitude," says Usuzepe Pasoli. "My mom forgets who she was, not me."
“I have dementia. Please be patient with me. »
Few suffer from dementia even in Elizabeth Pasoli. But the older it is, the greater the risk, with those over 90, nearly 40% suffering from some form of dementia, most with Alzheimer's disease. Dementia means "de-spirituality". Affected people lose their orientation – spatially, temporally and socially. Moreover, they are losing consciousness of their own biography. They are completely dependent on care. Elizabeth still knows who she is, where she lives. She can still go shopping alone – but only to Migros, whom she's known for 20 years. At the cashier, she always shows her card. It says: "I have dementia. Please be patient with me. "People would get upset so fast because of her," she says gently. "In our high-performance society, sick people are like sand in transmission, they get upset," her husband says.
154,700 people in Switzerland live with dementia – 20 percent more than in 2014. We are getting older as well as the dementia. By 2040, the Alzheimer's Association of Switzerland expects in its published forecast of about 300,000 affected. It will change and cause our society like no other disease – not just financially. "We cannot shut all these people away and hope for drugs, we must find a way as long as people with dementia can remain part of society," says Stephanie Becker, director of the Alzheimer's Association of Switzerland. "Dementia is not a good disease to be alone with." Therefore, our society should be friendly to dementia.
To see how this works, you need to drive to Central Switzerland, 1000 meters above sea level. The bakery staff in Engelberg know 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 want to try cheese but never make money. Engelberg is one of the first "dementia-friendly communities" in Switzerland. "Which means nothing but philanthropic and we've always been here," says Teres Meerhofer. The village retirement and nursing director is a woman with contagious energy. She is the initiator of the project, networking with public authorities, training shopkeepers, distributing leaflets, talking to police officers. Urgently necessary education work.
Only 35 percent of the population feel well-informed about dementia, a recent study showed. Dealing with dementia still causes a lot of uncertainty. Because dementia is more than forgetting. At certain stages, the affected show major behavioral changes. They become loud, some aggressive or whiny. The most important thing for a community that is dementia-friendly, says Meyerhofer, is that dementia is not a taboo subject. But what about the aperitif of the regional bank or discussing school classes – the parent principal has already taught in both places. "People want to help, but they need to know how."
Shame is great, loneliness is worst
But shame, their own memory, their own behavior can no longer be trusted, which is huge for those concerned. Many do not dare to associate with people anymore. Guiseppe Passoli knows this shame as a relative. "No one sees Elizabeth being different." Many friends and acquaintances turned away. "Elizabeth is still young, her friends have a hard time adjusting to her dementia." They no longer knew what to do with her, conversations became more difficult. It shouldn't take much. Walk for example.
Elizabeth Pasoli wants to go. Almost every day she's out and about, alone. Always the same route at the fastest pace. Her therapist recommended it. Get out, challenge your brain, don't give up, somehow master everyday life. This also means that she sits once a week on the bus and drives to the former area of the freight yard. Here the Mosaic association rented it out. Co-directors Ula Ahman and Christina De Biasio sit in a large, bright room. Everything in this temporary use is new, modern and on the go. "With our daily offer of structure for people with dementia not in the green field, but in the middle of the city, in life," says Cristina De Biasio. This is where people with dementia would belong. Not everyone is very old and depends entirely on help. Dementia is considered, in large part by the population, of late. It has been forgotten that the disease also sometimes starts, creeping, often unnoticed, the nurse says.
Since this summer, the Mosaic Association, in addition to the discussion and hiking group, has been offering a daily structure in St. Gallen. People with dementia under the age of 65 or those who are at an early stage can now spend days and days in this room. Talking and talking together, cooking, walking, jigsaw, caring but self-determined. Elizabeth Pasoli also comes once a week. She loves her very much, she says. She feels comfortable among her peers. Here she must not live up to expectations. It is important for both leaders to point out that they did not offer relatives an offer. It is an offer for those concerned. "We want to show that you can live with dementia," says Ula Ahman. Structured days, offers that keep the mind and mind alert, contact with other people, all of whom can not prevent dementia but slow its course, experts agree.
Forgetting is one thing, being in good hands feels the other. Two out of three people with dementia are being cared for by their relatives in Switzerland at home. A huge achievement mentally, physically and financially. Because relatives do this for free and thus carry indirect costs of almost $ 5.5 billion (see chart). "From a social point of view, it is an advantage if people with mild dementia are cared for at home," the Alzheimer Schweiz association writes. Already with a medium dementia home is more economical than caring at home, if you include free achievements of relatives. Petra Kenchtli also notes that dementia takes care of the home longer and longer. She runs the Somenweed Nursing Home in Watertown. "Often, the affected stay at home for too long, until the relatives can no longer stay or the patients are in a much reduced state."
Sonnweid is one of the leading dementia competence centers in Europe. Everything is done here to give people with dementia a good life. The first thing that hits you during your visit: you walk around a lot. Outside the balcony and back, in the garden, to the chicken yard, to the cafeteria and back. "The movement impulse is typical of a particular stage of dementia," the director said. Therefore there are wide ramps in the home instead of stairs and many open doors instead of closed stations. 1.5km of protected freedom. If you want to get out of the main entrance, you need to know the code where freedom stops.
But inside, residents are given as much sovereignty as possible. Mr. K. just got up from the sofa nap in the hallway. He cuts into the daily group kitchen now "white stuff" for pizza. Mr. K. he used to be a good cook, he doesn't remember, but his hands still know how to cut. At Sonnweid, 270 staff care for about 160 patients with dementia in various forms of home care. They do so with visible dedication. "We talk to people, not them," says Petra Knechtli. "These people have dementia, they forget about their names, like wearing pants, but their feelings, their feelings remain to the end."
In the room of silence and the dead
The conclusion, after all, is an important topic in Sonnweid. The Home Director takes you to one of the few closed rooms: The Room of Silence. Almost a sacred, round structure. In the walled niches there are archaic figures with black clay. Everyone stands for the deceased person here, made by himself. 75 figures are already in the range for 2019. Many residents die in the first twelve months after entry. Dementia itself is not fatal, but it favors terminal infectious diseases. "We are moving to a care facility for people with severe dementia," says Knechtli.
No one knows how long Elizabeth Pasol can live with her husband and daughter at home. "I no longer make long-term plans," her husband says. "What Elizabeth can do today, she may not be able to do in a week." The biggest concern right now is losing her eyesight. Dementia has reached the visual center of the brain. But learning to read Braille with a stick will not be enough for Elizabeth Pasolie to learn. "I can listen to audio books," she says. She can no longer understand her illness anymore. She lives completely in the now. At the end of the conversation, she looks tired. "Have you been here long?"
* The name has changed
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