My wife dies a little bit more every day

My wife 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 apartment in St. Gallen. His wife Elisabeth * sits next to him and is looking at her hands. She is 51 years old, a petite person with a lively face. She used to be a perfectionist. It’s thanks to her organisational talent that her dementia remained undetected for many years, says her husband. He lets his wife answer the journalist's questions on her own, and only adds to it if she no longer knows, or corrects where she confuses things.

He first noticed the changes in her five years ago. She never used to forget anything else, but now seemed more distracted, unfocused. Clarifications only started after the first blackouts, and the first diagnosis was burn-out. It finally became clear in the autumn of 2017: dementia at the age of 49. In the middle of life, with the diary full of appointments and plans, the daughter only 14 years old. "A absolute catastrophe," says Giuseppe Passoli. "My wife forgets who she was, but I don’t."

Few people suffer from dementia as early as Elisabeth Passoli. But the older you are, the higher the risk: among those over 90, almost 40 percent suffer from some form of dementia, most of them with Alzheimer's. Dementia means "de-spiritualisation". Those affected by it lose their orientation - spatially, temporally and socially. What's more, they also lose their consciousness of their own biography. They are completely dependent on care. Elisabeth still knows who she is, where she lives. She can still go shopping alone - but only in the Migros that she has known for 20 years. She always shows her card at the cash register. It says, "I have dementia. Please be patient with me. "People would otherwise quickly get upset with her, she says quietly. People with dementia experience difficulties in our high-performance society, says her husband,

154,700 people in Switzerland live with dementia - 20 percent more than in 2014. We are becoming older and older, and dementia is increasing. In its just published prognosis, the Alzheimer Switzerland association expects thinks there will be as many as 300,000 sufferers by 2040. That will change and challenge our society like no other disease – and not just financially.

"We cannot simply shut all these people away and hope for a drug: we have to find a way to enable people with dementia to remain a part of society as long as possible," says Stephanie Becker, director of the Alzheimer Association Switzerland.

Our society should therefore become dementia-friendly. To see how this works in Central Switzerland, you have to drive 1,000 metres above sea level. In Engelberg, the bakery employees know what to do if the same person wants to buy the same bread four times a day. And the owner of the cheese shop has been trained in dealing with older people who like to try cheese, but never carry cash with them. Engelberg is one of the first "dementia-friendly communities" in Switzerland.

"This means nothing more than being friendly towards everyone, and that’s how we’ve always been here," says Theres Meierhofer. The director of the retirement and nursing home in the village is a woman with contagious energy. She is the initiator of the project, and networks with the public authorities, trains shopkeepers, distributes fact sheets, speaks with police officers. Provides education that is urgently necessary. A recent survey showed that only 35 percent of the population feels well informed about dementia. Dealing with dementia still causes a lot of uncertainty, because it involves more than just forgetfulness. In certain phases, those affected show massive behavioural changes. They become loud, some aggressive or complaining. The most important thing for a dementia-friendly community, says Meierhofer, is that dementia should not be a taboo subject. It is something that should also be discussed at the aperitif of the regional bank or in school classes - the home director has already lectured in both places. "People like to help, but they need to know how."

But the shame of not being able to trust your own memory, your own behaviour, is great for those concerned. Many don’t dare to mix with people anymore. Guiseppe Passoli knows this shame "You can’t even see that Elisabeth has changed." Many friends and acquaintances had turned away.

They don’t know how to deal with her, and conversations become more difficult. But it wouldn’t take much. Taking a walk for example.

Elisabeth Passoli likes to walk. She is out and about, alone, almost every day. Always the same route at a brisk pace. Her therapist recommended this to her. Get out, challenge the brain, do not give up, somehow master everyday life. This also means that she catches the bus once a week and goes to the former Güterbahnhof-Areal (freight yard area) where the Mosaik association rents a room.

The co-directors Ulla Ahmann and Cristina De Biasio are sitting in a large, bright room. Everything in this temporary accommodation is new, modern and constantly changing. "We didn’t want our offer of daily structure for people with dementia to be somewhere in the countryside, but in the middle of the city, in the middle of life," says Cristina De Biasio. This is where the people with dementia belong. Not everyone is very old and completely dependent on help. A large part of the population, thinks that dementia is the end. They forget that the disease also sometimes starts unnoticed, slowly advancing, says the nurse.

From this summer onwards, and in addition to a discussion and hiking group, the Mosaik association also offers a daily structure in St. Gallen. People with dementia under the age of 65 or those affected at an early stage, can now spend days in this room. Talking and chatting together, cooking, walking, jigsaw, caring, but as they decide themselves. Elisabeth Passoli also comes here once a week. She likes it a lot, she says. She feels comfortable among her peers. Here, she does not have to meet any expectations. It is important for both organisers to emphasize that they did not created this offer to relieve relatives. It's an offer for those who are themselves affected. "We want to show that you can live with dementia," says Ulla Ahmann. Experts agree that structured days, offers that keep the brain and mind lively, contact with other people, etc., cannot stop dementia, but can mitigate its development.

Forgetting is one thing, feeling yourself in good hands is the other. Two out of three persons with dementia in Switzerland are looked after at home by their relatives. This is a huge task, mentally, physically and financially. Because the relatives do this without pay, and thereby take on indirect costs of nearly CHF 5.5 billion. "From a societal point of view, it is an advantage if people with mild dementia are cared for at home," writes the Swiss Alzheimer Association. Already with a middle dementia, however, a home is cheaper than care at home, when you also consider the free work carried out by the relatives. Petra Knechtli has noticed that dementia is cared for more and more at home. She heads the Sonnweid dementia nursing home in Wetzikon.

The Sonnweid is one of the leading dementia competence centres in Europe. Everything is done here to give people with dementia a good life. The first thing that strikes you when you visit is that there is a lot of movement going on. Out on the balcony and back in again, into the garden, to the chicken yard, to the cafeteria and back again. "The urge to move is typical at a certain stage of dementia," says the director. That's why there are wide ramps in the home instead of stairs and many open doors instead of locked stations. 1.5 kilometres of protected freedom. But If you want to get out of the main entrance, you have to know the code – this is where the freedom stops.

But inside, the residents are granted as much independence as possible. Mr. K. has just got up from his nap on the sofa in the hallway. He now cuts "the white stuff" for the pizza in the kitchen of the living group. Mr. K. used to be a good cook, and, although he does not remember it anymore, his hands are still known how to cut. 270 employees look after around 160 dementia patients in various forms of residential care in the Sonnweid. They do it with a visible dedication. "We talk to people, not about them," says Petra Knechtli. "These people have dementia, they may forget their own name, how to put on a pair of pants, but their feelings remain intact until the very end."