Ulrich Fey is a clown, but he’s not very funny. “Physical comedy is OK,” he says, “but not jokes. They don’t understand jokes anymore.”
But being funny isn’t Fey’s goal. Going to a nursing home with that in mind would be exhausting. “That’s just not going to work,” he acknowledges. Instead, he wants to meet them at their level. That’s why, when he changes his clothes, he puts knee-pads on under his checked pants: so he can kneel down next to the beds. The standard red nose is what he puts on last. As soon as the nose goes on, he is Albert the Clown. Then there’s no talking to him anymore. This clown doesn’t perform. He sits down, stands next to beds, holds hands, touches cheeks. As a clown he can do anything, but he doesn’t have to. “Everybody wants something from the elderly,” says Fey. “They have to eat, sleep, get up, join in, remember things and recognize visitors.” A clown has no expectations, and that can be liberating.
Albert the clown likes to sing. Music is often final resort to reach the elderly. Sometimes he sings, “In einem kühlen Grunde” [“In the cold ground” – a German folk song]. The song ends with: “I’d really rather die, then it would suddenly be silent.” A friend told him he shouldn’t be singing something like that in a nursing home, and Fey answered, “Well, if I can’t sing it there, where else could I sing it?” He performs nursery rhymes and hymns as well as classical songs. His magic bag holds his harmonica, rattle and kazoo.
IS IT A DISEASE IF EVERYONE HAS IT?
There are 1.4 million people suffering from dementia. That number is on the rise because people live longer, while doctors are diagnosing the disease earlier. And not only those with dementia are affected by it. Caring for sufferers is a challenge for their relatives. They pose a problem for social welfare systems and are an enigma to medicine. There are currently 25,000 scientists worldwide conducting research on different aspects of Alzheimer’s – such as Kenneth Shulman in Toronto, who has developed a screening test which sends shivers down any layman’s spine, or Heiko Braak in Ulm who collects brains.
Braak himself, however, displays symptoms quite different from those of dementia. His mind is far too alert for him even to think about quitting. An emeritus professor of the University of Frankfurt, he now, at the age of 76, researches Alzheimer’s in a modern, purpose-built laboratory at the University of Ulm. An enormous molecular model and some neglected houseplants function as decoration in the stairwell, where doors with yellow warning signs lead to individual labs.
Braak is examining slices of human brain. He has dissected, prepared, analyzed and cataloged over 2,400 brains in his search for the cause of Alzheimer’s – for damaged Tau proteins, one of the disease’s identifying features. He stains molecules with silver ions, which, under the microscope, makes the cerebral cortex of Alzheimer’s sufferers look like they’ve rusted. To hunt down the source of the illness, he’s been examining increasingly younger human tissue. He was alarmed to find the seeds of Alzheimer’s already present in the brain of a six-year-old child.
Braak discovered that the disease always starts in the same place and always spreads the same way – slowly for some, quickly for others. Some people display deficits early on; others are still mentally fit in the later stages. But in the end, all human brains are affected. In the course of his research, he only found 10 out of 2,332 brains with no evidence of Tau molecules, and they were all children’s brains. Can it still be called a disease if everyone has it, just at different stages? Braak is convinced we will never be able to halt the process. But it may be possible to slow it down. Neural pathways are important, he says – in particular, the thickness of their insulating layer. The thicker this is, the better the protection it can provide against Alzheimer’s. And the more often nerve cells are stimulated as a child, the thicker their insulating layer becomes.
So an intensive early childhood education may be beneficial. In Japan, says Braak, there was a music teacher called Suzuki who from 1945 onwards taught thousands of pre-school children how to play the violin. His theory could be tested on these children, who since then have grown old. But you’d have to do a search for them to see how many are affected by dementia and to what degree, and you’d need a control group. And at least 10 more years to do the work. Braak doesn’t have that much time. When he’s retired – whenever that is – he’ll finally be able to devote himself to his second passion: classical music. Not the brains of Japanese violinists.
HELPING PATIENTS WITH DEMENTIA EXPERIENCE ‘VALIDATION’
Music is also important to Fey in his work as a clown – as well as dementia expert Naomi Feil. Just like Fey, she reaches those with severe dementia by singing with them. Probably nobody else on Earth has spent more time in nursing homes than she has. The first time she entered a care facility was in 1940, when she was eight years old. The home was run by her father in Cleveland, Ohio. Feil helped look after the elderly, and they looked after her. “They were my friends,” she says. “Apart from them, I didn’t have very many.”
OK, people are no longer being tied down with straps. There are drugs for that now Naomi Feil
She is now 80 herself and a legend in geriatric care. She still travels the world, holding seminars to train nursing professional care givers. Her method, “Validation,” aims to communicate with people suffering from dementia by responding to them no matter what they are currently thinking and feeling. Instead of reassuring, distracting or lying to them, Validation is about helping them face their feelings – anger and wrath, sadness and fear. It’s about accepting and experiencing their feelings with them and reflecting them back. Which can be difficult if they’re insulting or spitting at you. It’s crucial to keep a professional distance and keep reminding yourself it’s not personal.
Feil can still remember her first patient. She couldn’t get through to him for 10 years. At that time, people still tried to bring people suffering from dementia back to reality: “You’re in a home. Your mother is dead.” It was only when the man died that she found out what his issues had been: the beatings his father gave him as a child, and a lawsuit he lost as a lawyer. “I should have listened to him,” says Feil, “but I only tried to change him.” She says that when you listen, trust is created, then anger can subside. “It isn’t about curing them. When you’re 85, you don’t get therapy anymore. Things are different.”
For Feil, dementia isn’t a disease. “It’s age. When a 40-year-old has hardened arteries in their brain, that’s not normal. For a 90-year-old, however, it’s completely normal. But doctors don’t distinguish that difference.” Validation has become a recognized methodology in geriatric care. But Feil believes she hasn’t achieved much. “OK, people are no longer being tied down with straps,” she says. “There are drugs for that now. If someone gets agitated, they increase the dosage. Everyone just tries to calm them down. Nobody really listens to them.”
DEMENTIA-FRIENDLY LIVING ARRANGEMENTS
Nursing homes have also become Berlin architect Eckhard Feddersen’s purpose in life – in particular, how to build them so that residents, carers and visitors all feel comfortable there. It’s the little details that distinguish good nursing home architecture. For example, bathrooms that look inviting instead of clinical. Doors to living quarters with frames that light up to show you where to enter. Doors to cleaning rooms that are hidden from view because the elderly don’t need to open them. And they should be easy to open. “I don’t like people having to rattle doors,” he says.
Feddersen wants to move away from the traditional clinical atmosphere even though nursing homes evolved from hospitals. His modern nursing homes have apartments for eight to 12 people. Relatives should feel welcome and children shouldn’t feel as though they are in the way. He wants to help residents have visitors more often.
Feddersen also makes use of the proverbial light at the end of the tunnel. He turns it into more than just a decorative element. Because people affected by dementia like to go for walks, he creates paths for them. Light attracts and guides them, and he uses it to design a circular route from one destination to the next. He’s had good experiences with patios that feature a colonnade like those in monastery courtyards. Feddersen believes that architecture contributes to the general atmosphere, having an effect on both carers and those in care.
Another building element, balconies, “are only a substitute for a garden,” says Federsen. He no longer builds narrow, individual balconies, preferring to design a large one for four rooms rather than four smaller ones that don’t get used. “It’s about avoiding the unusual and the unfamiliar,” he explains. That also means a careful choice of accessibility supports so that nobody needs to feel disabled.
ONE DEMENTIA PATIENT WHO DIDN’T FALL THROUGH THE NET
Helga Rohra, for example, wouldn’t even consider one of those mobile phones with a large keyboard for the elderly. She has an iPhone. A telephone company gave it to her because they wanted to see how compatible mobile phones are with dementia. Rohra was diagnosed with the condition six years ago. Since then she has been considered unfit for work, at least according to the employment agency who classified her as “unemployable”. However, she has not been classified as unable to work, so she can’t receive a pension and has to live from Hartz IV (Germany’s basic social security provision). Before she could draw that, she had to use up all her savings. She currently has €1,500 (app. $2,050) left for her funeral.
You have to sort yourself out before you can do anything else Helga Rohra
Nevertheless, Rohra is a determined woman, someone who ensures she receives everything to which she is entitled. The problem is, unfortunately, that she isn’t entitled to anything. As a sufferer of dementia, she falls through the net. The early onset of her condition only made things worse. There are no provisions in the pension system for a 54-year-old with dementia. In order to receive benefits, she would need to have physical problems. But she doesn’t. If only she had Alzheimer’s, then she would be entitled to early retirement. But Rohra suffers from Lewy Body Dementia. The condition is comparatively rare, and just as dramatic, but it’s not Alzheimer’s. Social legislation is very precise on this point.
For about six months after being diagnosed, Rohra was stunned. “You have to sort yourself out before you can do anything else,” she says. Eventually she ventured back into the world. She got in contact with the German Alzheimer’s Society. She attended their support group. Told her story anonymously to a journalist. Suddenly she was on stage describing her fate. She wrote a book. She became the first affected person ever to be voted onto the German Alzheimer Society’s board of directors.
In the meantime, Rohra has become a member of Alzheimer Europe’s board of directors and travels to Brussels every three months. She’s met with German minister of health, Daniel Bahr; the minister of family affairs, senior citizens, women and youth, Kristina Schröder; and the minister of economics and technology, Phiipp Rösler. She’s fighting to get meeting places and integration programs for people affected by dementia. She wants to give them a purpose to their lives for as long as possible. And she never stops talking. She used to be an interpreter. Nevertheless, according to officialdom, she’s unemployable.
PEOPLE DON’T NEED MORE MEDICATION, THEY NEED MORE COMMUNICATION
Rohra’s story displays just one of the many different manifestations of dementia. Each patient exhibits different mental and emotional symptoms. Some are able to remain at home; others have to move into a care facility. The former situation risks the “shame of having a crazy person in the house”, the latter, a guilty conscience for having “got rid of them”. “Dementia confronts us with questions for which we have no answers,” says sociologist Reimer Gronemeyer. He is the chairperson of the German dementia support group Aktion Demenz, which aims to make the country dementia-friendly. Like Feil, he also believes that dementia is not a disease but a symptom of old age. Clinical diagnosis is counter-productive: each early diagnosis only leads to one more worried person. “People don’t need more medication; they need more communication,” he says, because the disease progresses more slowly and less aggressively when the affected individuals are still socially integrated. Currently, they aren’t. About half of all people over 85 live alone. Loneliness is normal in old age.
Professional carers, even if they were affordable for everyone, wouldn’t be much help. Carers aren’t relatives or friends. Therefore, according to Gronemeyer , we need to find new modes of living, new social structures, senior residential communities with volunteer dementia carers. “We need to become more socially aware, rediscover our sense of neighborliness and genuine friendship,” he explains. “Dementia makes us aware that our living environments are completely isolated and communication has partly disintegrated. It is a finger pointing at us with the question: ‘What kind of life are you actually living?’ It’s difficult, but it can be beautiful, too.”
“Essentially, dementia isn’t dramatic,” says Fey, the hospital clown. “But there are groups within society that make it out to be a dramatic illness.” You could prepare for it by confronting the dark side of the soul early on. Dementia will claim whoever doesn’t. “Our predominant feeling in dealing with dementia is fear,” he explains. “Just like it is for those who actually have it. Only when I’ve accepted and face my own fear will it no longer stand in my way.”
That’s easy for a clown. He thinks all emotions are good, no matter what they are. If somebody yells, it’s “interesting.” If somebody’s not nice, it doesn’t matter. It’s only difficult when he has to experience his own helplessness, when he notices that he can no longer communicate with the person in front of him. Otherwise, clowns don’t have bad days. A clown always gest it wrong. And because he always gets it wrong, he can’t fail.
Albert the clown sits next to a man who always tells him the same story: “I was a pilot; they shot me down!” The man was shot down and taken prisoner by the Americans, and his English is still good. The man asks questions; the clown answers them. It’s surreal the way the clown sings his song and the old man repeats his words, minute by minute, like a refrain. “La la la” – “I was a pilot; they shot me down!” – ” La la la” … over and over. If it weren’t so serious, it would be incredibly funny.