‘Good morning, how nice to have you here! Do you know what awaits you?”
“I don’t know… maybe I’ll get some medicine?”
“That is possible, but first I am going to talk to you through the interpreter. I would like to get to know you well.”
The Turkish-Dutch woman in her late sixties (the patient was anonymized at the request of the hospital; her name is known to the editors) has taken a seat opposite Marleen Harkes (47) in her consultation room at the geriatric outpatient department of Rotterdam’s Maasstad Hospital. Her daughter on one side, the interpreter on the other, and her granddaughter next to it. “How nice, three generations!” the geriatrician had exclaimed upon entering.
Harkes specializes in memory problems in people with a migration background for a reason. When she started as a clinical geriatrician at the Havenziekenhuis in Rotterdam twelve years ago, she had no control over the elderly with a migration background in her waiting room. And in a diverse city like Rotterdam there were quite a few.
Dementia is also increasing due to the double aging of the population, it states RIVM – and among elderly people with a migration background, the increase is even stronger than the average in the Netherlands, according to others research. They are more likely to have diabetes, obesity or vascular disease: conditions that increase the risk of dementia. Harkes noticed that this group often developed memory complaints at a younger age. “I wanted to help them, but we didn’t understand each other.”
I didn’t have to reinvent the wheel. I was able to transfer a lot of knowledge from Amsterdam to Rotterdam
Her patients did their best to share their complaints, that was not the problem. And they always had children with them – usually daughters – who translated what the doctor asked and quickly translated the answer into Dutch. They were used to that: first-generation migrants did not always learn the language. The children told the doctor about the increasing forgetfulness or changing behavior of their father or mother. Still, Harkes says, she often felt inadequate.
She found out that Jos van Campen, her colleague at the OLVG hospital in Amsterdam, had encountered the same problem. He and colleagues then set up an outpatient clinic for elderly people with a migration background who may be affected by dementia. Harkes: “I didn’t have to reinvent the wheel. I was able to transfer a lot of knowledge from Amsterdam to Rotterdam, where I worked with neuropsychologists from Erasmus MC.”
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Language barrier
And so the Maasstad Hospital was given a new approach: the first conversation is now conducted with only the patient, assisted by an interpreter, but without the informal caregivers. That took some getting used to for the children, says Harkes. But they unintentionally color their story with their own emotions. And they are often used to speaking in front of their parents because of the language barrier.
Are you in pain anywhere?
Our mother suffers a lot from her back.
And father or mother often feel less free to say everything when in the company of the children. For example: I still want to go outside alone. Because the children are so sweet to bring them and pick them up everywhere, because they are afraid of falling or getting lost. Harkes: “But it also deprives the parents of their zest for life. Sometimes a visit to the clinic is their first outing in months.”
That first conversation requires a good interpreter, who also hears what the patient does not say. Harkes: “And I want to know whether the patient cannot think of certain words or whether he or she is avoiding the answer. I also think this is important information when conversing in Dutch.”
Then I pray, but I often forget the surahs
The informal caregivers are not pushed aside. Harkes: “Their story is important.” In families with a migration background, caring for parents is often seen as a duty. They took care of you, now it’s the other way around. “Taking mom to a nursing home is completely out of the question,” says Harkes. She tries to help by explaining dementia. “If you have a broken leg, you don’t have to struggle at home, but you go to the hospital for professional care,” she urges the children.
Harkes affects many overburdened informal caregivers who try to combine family and work with caring for their parent. “We should especially not want to take over healthcare,” says Harkes. “It is precisely the combination of professional help and that of your own family that is powerful.”
Good guidance helps both parties. For example, people with dementia usually sleep poorly. Sometimes informal caregivers solve this by staying the night with mom or dad. “The result is that they also sleep poorly,” says Harkes. “There are also tricks to help people with dementia sleep better.” Consider a heavy blanket or more exercise during the day.
Marleen Harkes at the Maasstad Hospital in Rotterdam.
Photo Hedayatullah Amid
The woman hesitates
Back to the consulting room. The doctor explained that the daughter and granddaughter will talk to a social worker. Today that is Eva Versnel (31). She takes them to another room.
Once they have left, Harkes leans toward the woman sitting opposite her in a long coat. “Do you know why you are here?” she asks kindly. The interpreter translates. The woman hesitates. “I’m here because my children say I forget everything. They think I have the same thing as my older brother.”
“What do you think that they think that?”
“I think they are right. Then I cry.” Tears slide down her headscarf.
“Do you mind if I find out what your problem is this afternoon?” asks Harkes. The woman nods. Harkes asks and asks. To her life story, her hobbies, her mind and family relationships. Harkes wants to know what she forgets. And what exactly happened when she put the 50 euros down somewhere and then couldn’t remember anymore Where. Is she on medication? Does she take it herself or does she get help? What does her day look like?
“I would like to know everything from the moment you wake up. You get up at 8:00 am. And then?”
“Then I pray, but I often forget the Surahs [koranteksten].”
After an hour and a half, Harkes knows a lot more about her patient. She said that she was married off young, came to the Netherlands with her husband and soon had her first child. When she had the courage to divorce her abusive husband, she already had six children. She raised her alone, in a country that always remained a bit strange to her.
She says that she hardly goes outside anymore, after she once didn’t know the way back. A neighbor walking by showed the way home. She no longer cooks herself after leaving the gas on once. Her daughter and granddaughter do everything for her, she says.
“Are you enjoying your grandchildren?” the doctor asks.
“I find it very busy when they are there.”
“What is the best period of your life?” asks the doctor. The interpreter translates. It is quiet for a moment. “I don’t remember a good time,” she says. The interpreter, who has been translating stoically until now, tenses up for a moment. Harkes goes to pour water.
Tea, oil, eggs and soap
Patients suspected of having a form of dementia are given standardized memory tests, Harkes had previously explained. It was striking that people with a migration background often performed poorly, while this was not due to their intelligence or degree of dementia. It turned out, the doctor says, that the tests did not match their experiences.
People who grow up in the Netherlands, says Harkes, are used to tests: “They know: sit up straight and do your best.” Many Dutch people with a migration background do not have that reflex, she explains. “When a doctor asks: what day is it, they think: I don’t trust that doctor, he doesn’t even know what day it is.”
Migration can also be traumatic, especially if you are uprooted so young and not lovingly received
The tests are done by geriatric nurse Kelly Willemstein (36), who sits next to the Turkish-Dutch lady. “I’m going shopping,” Willemstein tells her. “Can you help me remember the list? I need four things: tea, oil, eggs and soap. Can you repeat that?” The interpreter repeats the question.
The woman says: “Cucumber, potatoes, olives and sugar.”
Can you also name my list, Willemstein asks and repeats it again.
The woman says: “Eggplant, onions, rice and peppers.”
It may be, Willemstein will later explain, that she could not remember it. “But she may also have thought: I can’t make a meal with those products. I just need more things.” She just wants to say, she can’t draw any conclusions yet.
Willemstein continues with tests. Assignments such as: touch your left ear with your right hand, the woman finds difficult. She doesn’t know what season it is. She does know that it is raining. Imitating the movement that Willemstein makes with her hands is only moderately successful.
“Are you happy or sad?” asks the geriatric nurse.
“Sad.”
“Is Life Full or Empty?”
“Empty.”
Chatting, cooking or walking
Marleen Harkes about the need for a good interpreter: “I want to know if the patient cannot think of certain words or if the answer is confused.”
Photo Hedayatullah Amid
At the end of the day, Harkes, Willemstein and Versnel put all the information together. They combine this with medical information from a physical examination and an ECG. Harkes noticed that the woman was having difficulty putting her clothes back on in the correct order.
Despite the forgetfulness and clumsiness, Harkes does not think about Alzheimer’s disease. “Then she would probably deny that there is anything wrong with her.” The geriatrician is more likely to think of vascular dementia or depression, or a combination of the two. “Dementia can also be triggered by trauma, she says. A migration can cause trauma, especially if you are uprooted so young and not lovingly received.”
The three women enter for the last conversation of the afternoon. Harkes calmly explains everything. She’s going to request a brain scan. She also suggests help with healthcare. The daughter nods. “That would be very nice.” And, Harkes continues, she wants to see if she can go to a daytime activity, for example with other Turkish women – to chat, cook or walk. Under supervision, she says, so that you don’t have to worry and are relieved. The daughter also thinks that is a good idea. She will discuss with her mother whether she wants to see a Turkish-speaking psychologist.
Harkes leans toward the woman. “I am very happy that you came and told your story,” she says. “You have been through a lot.”
“My head is full,” says the woman.
Harkes: “We are trying a medicine that might help clear your head.” She puts a hand on her shoulder: “A full head can also make you forget things.”
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