MARL — Friedhelm Lischewski had breakfast in the kitchen at 4 a.m. today. The second breakfast at 8 a.m. Afterwards, he lies down on the couch in the living area, rests his dark gray mop of hair on the cushion and closes his big blue eyes. He dozes under a thin blanket, taking his morning nap, while the other residents walk past him towards the kitchen.
Lischewski, 76 years old, was once a teacher and completed his doctorate late in life. The books and thoughts of great philosophers are his home — his own thoughts are his home. Reading, writing. During the past few months since moving into the Gammeloase, a unique dementia-care facility here in western Germany, Lischewski has been constantly looking for his office.
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A few months ago, he walked into the waiting room of the in-house doctor’s office and threw out everyone who was waiting there. He insisted that the room was his office and that he needed his peace and quiet. He had to prepare a lesson. The staff went along: Everyone was told they would have to wait in another room until they were called.
Most likely, no other care home in Germany would allow a patient with dementia to organize their day with so much freedom. In other care homes, there are times for waking up and going to bed, there are meal and washing times that create fixed structures around the residents. A support, say some. For others: a prison.
Fostering autonomy
The Gammeloase is a dementia ward in a care home for the elderly in Marl, in the western region of North Rhine-Westphalia, which is currently attracting plenty of attention.
In professional circles, the man behind the concept, Stephan Kostrzewa, a trained geriatric nurse and social scientist, is considered a rebel. The ward is his personal utopia. A place where residents with dementia can do whatever they want. Where it is not a strict schedule that determines when they get up, when they are washed, when they eat and what they do. Only they themselves decide.
We adapt to the dementia patients. Not the other way around.
Even the ward’s name — Gammeloase (literally: “bum’s oasis”) — refers to one of Kostrzewa’s concepts: “Therapeutischen Gammeln“, or therapeutic bumming. Kostrzewa said he came up with the term in the shower. He then researched Gammeln: a Germanic root word, gaman, which means “pleasure, fun, joy”. He found that this is exactly what people with dementia need from their environment: a focus on making their current life as pleasant as possible.
So, if the patients want to — and they do, says Christian Löbel, head of the residential area — they drink from the milk jugs on the table, eat with their hands, and put cutlery in their underpants so that they can take it with them. No one will stop them. In the morning, the carers sit in the corridor and wait for the residents to get up.
The motto: We adapt to the dementia patients. Not the other way around.
This breaks with conventions, with routines that care staff had learned over decades. In inpatient care, dementia patients are often patronized like children. Kostrzewa’s concept has the opposite basic idea: people with dementia must not lose their autonomy.
A rethinking exercise
But how realistic is it on a daily basis to empty a doctor’s waiting room because a resident wants to turn it into his office? Or offering breakfast at four o’clock in the morning because a resident is hungry? How much self-determination is possible in a care home? Is the Gammeloase a revolution or a dream? And what can other homes learn from a place like this?
After his nap, Friedhelm Lischewski walks into the kitchen, very slowly, taking small steps, which is due to his Parkinson’s disease. “Well, young fellow, would you like something to eat?” a resident asks him.
“I’ve already had breakfast. I’m going to my office,” replies Lischewski.
The nurses have placed a heavy, old bureau in the room next to the kitchen for Lischewski. A notebook lies open in front of him and he has jotted down a few lines in it. The desk is the only piece of furniture in the room. There are a few books on the windowsill: Bloch, Adorno, Foucault. His preferred thinkers, they have accompanied him this far.
Christian Löbel says that the Gammeloase has the same staffing ratio as other wards. They receive no funding and have no extra budget. The food always comes from the canteen kitchen at the same time, but they have a fridge, a microwave and a dishwasher. The premises are not particularly special either. In the long term, nothing about the concept is more expensive. It’s all about rethinking.
In 2021, it was estimated that 1.8 million people in Germany were living with dementia. (Worldwide estimates are 55 million) In part because of an aging society the numbers will continue to grow, with 2.8 million Germans expected to be hit with the disease by 2050.
Some 334,800 people, or 18.6% of people with dementia, live in care homes. Most of them have relatives who ask themselves: is my wife, my mother or father, my sister in a good place?
Many carers and experts report that the care system in retirement homes, including dementia homes, is no longer sustainable. The staff, of whom there are too few, as is the case everywhere in the care sector, have a tight to-do list: personal hygiene, handing out food and tablets, keeping records, and all of this has to be completed at certain times.
There is hardly any time left for listening, for just being there, for a hug. Hardly any time for what people with dementia need most: attention and, like every other person, self-determination.
Man behind the project
Kostrzewa, 58, sits at one of the round tables in the living area. His movements are smooth (he is a musician, plays the violin and bagpipes), his voice is warm (his first job was as a geriatric nurse). He says things like: “Dementia patients are trained in care homes to fit in with the rules.” Or he quotes the renowned nursing scientist Erwin Böhm: “We produce well-cared-for rehabilitation corpses in care homes every day.” In other words: physically, people are well cared for. But psychologically and socially they are neglected. “Because there’s a lack of human attention, there’s no room for it in the .”
I know how to overthrow the system.
Kostrzewa inherited his aversion to systems that restrict self-determination from his parents. His father always said to him: “Every system stands or falls with cleanliness and order.” He thought to himself: good, then I know how to overthrow the system.
When he started his junior year in high school, he was given a new teacher in social sciences. One who didn’t sit at the front of the class, but took his chair and sat among the students. He taught them to question everything. Especially the system. Especially authority. “He taught me to think differently,” recalls Kostrzewa.
After leaving school in the mid-eighties, Kostrzewa trained as a geriatric nurse. Old school, he says: he was taught to put dementia patients in place every time he came into their room: “Good afternoon, I’m nurse Kostrzewa, it’s March 19, we’re in the nursing home, I’m going to do the morning wash with you now.” This was called rehabilitation training. In this way, they tried to point out to the elderly over and over again what reality was, which was crumbling more and more for them and which they were finding increasingly difficult to grasp.
Later, during his studies, he asked himself: Why should dementia patients be brought back to reality again and again, why should strict rules be imposed on them? He found no scientific evidence for this.
Self-determination
Gerontologist Stefanie Wiloth conducted research into the quality of life of people with dementia at the University of Heidelberg. Her conclusion? “The elderly care system in Germany should actually be reset to zero and then slowly rebuilt in a completely different way.”
The resident decides whether he or she wants to participate in an activity
She finds the concept of the Gammeloase exciting. Only the name is unfortunate: Gammeloase tends to reinforce negative images of dementia, she says. Along the lines of: they’re bumming around, they’re bored, they’re not active.
Autonomy does not mean leaving people to their own devices — Christian Löbel emphasizes this. They offer activities. The difference is that the resident decides whether he or she wants to participate in an activity. Last year at Christmas, a carer made an Advent wreath. Other handicrafts were also available. The residents could have joined in. But they didn’t want to.
Instead, they sat in a circle around the carer and watched her make it. They found that much more exciting. “Just watching can be a really nice activity,” says Löbel.
Where to set limits
The other wards in the Marl nursing home work differently, even though the whole building has open doors and is colorfully decorated. They follow the rhythm of the service and are tidy.
In Gammeloase there are clothes lying around, old magazines and everything that the residents carry around. There is a snack table in the living area with peanut flips and jelly babies on it. Dozens of handbags hang from the bars in the corridor, which are supposed to provide support when walking. On a shelf in the ward kitchen are decorative Santa Clauses and decorative Easter bunnies.
Löbel says that it makes no difference to dementia patients whether it is Christmas or Easter time — so why put away the beautiful decorations? The carers accept the mess, he says, because it is appropriate for the elderly. Their limit is dirt — if it gets out of hand, they intervene.
And what if someone chain smokes, opens their first beer in the morning and doesn’t stop drinking for the rest of the day? What if addiction meets dementia? “Well,” says Gisela Kreutz, ”that’s a very complex issue. We can then talk to the resident, to relatives, to doctors. But in the end, I’m not going to take away anyone’s cigarettes or alcohol.”
Five nurses have already resigned since the Gammeloase opened because they couldn’t cope with the anarchy, says Löbel. Ulrike Schramm, a nurse from a neighboring ward who has been in the job for 34 years, says: “I think the concept is great, but it’s not for me, I could never work like that. I need structure.”
Is the residents’ freedom being thwarted by the care staff’s need for a structured, clear working day? Both sides have rights.
“I think such a radical change is a problem for many nursing staff who have been doing the job for years and are following an entrenched routine,” says Stefanie Wiloth.
What if someone falls at night?
A huge learning process has to take place, and that requires great openness and a spirit of experimentation. Perhaps holding on to the old structures also has something to do with security and control, says Wiloth. The nursing staff may also not entirely trust themselves to deal with situations that are difficult to foresee, because everyone does what they want, where they want, when they want.
What if someone falls at night? What if someone runs away? Sure, something like that can happen in any care home. But the less orderly it is, the more likely it is to happen. The more active the elderly are.
Quality time with patients
Today, Gabriele Nemes-Rath is nowhere to be found. She wears hats that she forgets on her head and is happy every time she reaches up. She loves to sing; all you have to do is sing a song she knows and her voice resonates through the corridors of the ward. She also enjoys walking, and today her orthopedic feet carried her out of the ward in small steps.
A nurse first searched the whole house, cellar and laundry. She searches further, asking at nearby supermarkets, even at the bakery, in fact at all the stores that Nemes-Rath could have reached on foot. She is nowhere. About an hour later, the police bring her back. The physiotherapist recognized her as she drove past on the street and let the police know.
In Germany, care homes are not allowed to lock people up unless there is a court order. GPS trackers are also only permitted in rare cases. When residents with dementia wander out onto the street, things can quickly become dangerous. Because of traffic or because they get lost. A problem that does not only exist in the Gammeloase.
When Nemes-Rath returns, a nurse takes her by the hand. Then — one hand around the hip of one, one hand on the shoulder of the other — they do a little dance. There are scenes like this all day long in the Gammeloase: carers who are close to the residents, who appear exuberant and relaxed. Above all, they are present. They sit next to the residents on the couch and hang out with them. They hold hands during naps. They join them at the table for coffee and cake. They have time, and that is their most valuable gift to the people they care for.
Another resident, Maria Krause, cries every morning, sobbing: “I want to go home!” They accept her grief for what it is. You won’t say: it’s not so bad, Mrs. Krause. Or: there’s no reason to be sad, Mrs. Krause. The only honest consolation is: being there, understanding.
Krause is small and gaunt, with two thick gold rings dangling from her right ring finger. She constantly holds the hand with the rings to her cheek, a permanent “oh!” pose. She was kicked out of her previous home. Too loud, too stressful.
But she is very sociable, says Löbel — if you only pay attention to the fact that she will resist everything, unless it’s red. She won’t put on a sweater in the morning unless you hold a red sweater out to her. She won’t eat her jam sandwich in the morning unless it has red jam on it. She won’t eat lunch unless the dish is red. Sometimes the staff work with food coloring.
Fewer medications
It is difficult to measure the satisfaction and well-being of dementia patients, but there is one parameter: fewer psychotropic drugs, particularly tranquilizers. Resident Maria Krause, for example, is now receiving a micro-dose of psychotropic drugs, down from ten milligrams a week to two, says Löbel.
The federal state of North Rhine-Westphalia, where Marl is located, is one of the states in Germany where the most psychotropic drugs are administered. This is according to a report published by the AOK scientific institute in 2023. Löbel reports that he has already seen doctors prescribing psychotropic drugs to dementia patients without being asked.
Pain is an important factor when it comes to behavioral abnormalities in dementia patients.
Home manager Kreutz, Löbel and Kostrzewa say they have been able to reduce or even discontinue most of the medication. This is because they did not constantly frustrate the residents by correcting their behavior. They are not so rushed and therefore have more room to respond to the’ emotions. To analyze their behavior, to develop theories about what could help. Does he need more affection right now? Is the resident in pain?
Pain is an important factor when it comes to behavioral abnormalities in dementia patients. They are often unable to put into words that something hurts. The pain remains and affects the psyche. Behavioral problems are a symptom, the pain is the cause — but psychotropic drugs only treat the symptom.
Stefanie Wiloth also confirms this: residents may need less psychotropic medication if they feel that their needs are being met. And that pain can lead to depression or aggression. If you look at the behavior as a symptom and search for the actual cause, this can also lead to a reduction in the administration of psychotropic drugs.
A long-lasting friendship
When Kostrzewa arrives at the Gammeloase this afternoon, Lischewski and a few other residents are sitting around a table in the kitchen. Their coffee cups are half empty and only crumbs of cake remain on their plates. Kostrzewa puts a hand on Lischewski’s shoulder to greet him and says: “Well, Chief?”
He’s always called him that, they’ve known each other for 40 years. The Gammeloase would probably not exist without Lischewski. Because he is the one who taught Kostrzewa as a teenager. He’s the one who taught him to think differently.
Their friendship lasted over the years. Kostrzewa told Lischewski about his idea to write a book about “Therapeutischen Gammeln“. Lischewski was enthusiastic. That was exactly his school of thought — applied to the field of dementia care.
Kostrzewa calls the book a “counter-proposal” to current care practices for people with advanced dementia. In the introduction, he describes people with dementia as “therapeutic fair game”, rebukes “coercive therapeutic offers from the dementia industry”, writes of “therapeutic garbage”, “quirky and perverse forms of intervention”. The tone: a mixture of science and polemic.
The book was published in May 2023, five months after a devastating diagnosis for Lischewski: Parkinson’s disease and the dementia that is sometimes associated with it.
