Suddenly Words Fail You
The number of people suffering from dementia in Germany increases every year – also among people with migrant backgrounds. These people face particular difficulties in connection with the illness: Many of them forget the German language skills they have acquired and are unable to take advantage of support services. The “DeMigranz” program, funded by the Robert Bosch Stiftung, aims to raise awareness and spread information about this problem.
The garden of a senior citizens’ group residence for dementia patients of Turkish origin in Stuttgart. In summer, families and friends drink a glass of black tea or a cup of moka, even in the evenings. “This is what many of them are used to,” says Ergun Can (right) who frequently checks in to see how things are going.
When Amalia Stachera stands at the counter in the bakery, words fail her. The 85-year-old woman points hesitantly at the rolls, then raises two fingers. “Dwie bułki,” she murmurs softly. She knows how to say “two rolls” in Polish. Up until a few years ago, she could also say it in German. A native of Poland, she learned the German language about 30 years ago, when she came to Stuttgart to work and financially support her family in Krakow. In 2009, Amalia Stachera’s cognitive functioning began to be altered by dementia. First she often forgot her keys, then her money – and a few years ago, the German language. When she makes a great effort, she can still remember a few words. But “two rolls?” – She simply can’t come up with it. Which is why the elderly woman no longer goes shopping by herself. It is also the reason she can’t communicate with the caregivers who look after her every day in her home. Nor does she participate in any therapy programs offered to people with dementia, because they are only offered in German – and because she somehow feels ashamed that she is ill and can no longer understand anything.
According to the Deutsche Alzheimer Gesellschaft (German Alzheimer Society), approximately 1.7 million people in Germany are currently living with dementia. As of 2015, 108,000 of them came from migrant backgrounds. These numbers will continue to grow in the coming years, with experts anticipating approximately 300,000 new cases per year in Germany.
“In the course of their illness, people with migrant backgrounds who are affected by dementia frequently lose their command of the German they learned as a foreign language,” says Sümeyra Öztürk of Demenz Support Stuttgart. This non-profit organization works to improve the lives of people with dementia and sees itself as a connection point between research and practice.
Loss of memory, language, and homeland
In individuals with dementia, memory traces from more recent stages of life disappear more rapidly than those from their childhood, youth, and young adulthood. Therefore, dementia patients who only arrived in Germany later in life often lose their memories of their lives in this country. The resulting communication problems with German doctors and caregivers thus frequently lead to mistakes in care or inadequate therapy and support services.
Social worker Öztürk also knows that “there are many other difficulties on top of this. Depending upon the culture, affected families handle cognitive changes in different ways. For example, the subject may be taboo; or the symptoms might be presented as not very serious.” For some, she says, it would be completely unthinkable not to care for the sick family member themselves or to place the affected person in a home. One reason for this could be that many German facilities are not equipped to deal with the cultural needs and habits of patients with migrant backgrounds.
Ergun Can, former City Council member and an active dementia counselor with extensive experience and contacts, founded an aid association and introduced the project to many people with Turkish backgrounds. “Only Turkish-speaking caregivers work in the shared apartment,” says Can. “They cook together with the residents, provide them with medication when they need it, and assist them with their personal hygiene.”
Better information about multilingual support
In order to improve the situation for dementia patients with migrant backgrounds, since 2017, Demenz Support has been running the DeMigranz project, supported by the Robert Bosch Stiftung. The project brings together stakeholders and networks at the level of both policy and practice from all over Germany. “Some individual programs for dementia patients with migrant backgrounds already exist,” says Öztürk. But up to now, she says, there has been a lack of dialog between affected individuals and representatives from the health care system. On the one hand, patients and their families know far too little about what resources are available to provide good support and care for people with dementia. On the other, health care experts know too little about the needs of dementia patients with migrant backgrounds.
“We want to initiate a dialog and communicate with people. Affected individuals and their families who live in Germany should be better informed about the subject of dementia; they should have access to professional support – and then take advantage of it,” Öztürk explains. At the moment, she and her colleagues are conducting a type of inventory: What resources and information are available for dementia patients with migrant backgrounds, and in what languages? Who are the stakeholders; what networks and connections need to be established; who can learn and benefit from whom?
Group living with dementia – in Turkish
Ergun Can is one person that Demenz Support immediately called on for assistance in the context of DeMigranz. The sales engineer, originally from Turkey, is the volunteer director of the aid association Emin Eller, which supports a senior citizens’ group residence for dementia patients of Turkish origin in Stuttgart-Zuffenhausen. The accommodations were constructed by the city and the Stuttgarter Wohnungs- und Städtebaugesellschaft (Stuttgart Residential and Urban Development Association ‒ SWSG). “At the time, the city said they could build and furnish the residence – but how would we reach the people who need the services we provide?” recounts Sümeyra Öztürk. “So we looked for multipliers that Turkish-speaking citizens would listen to and trust.”
“The city said they could build the residence – but how would we reach the people who need the services?”
This is where Ergun Can came in. He is a former City Council member, a member of various associations, and an active dementia counselor with extensive experience and contacts. He founded an aid association and introduced the project to many people with Turkish backgrounds. The group accommodation was established in 2016 in the ground floor of an apartment building. At first there were five residents; today there are eight – and demand is high. “Only Turkish-speaking caregivers work in the shared apartment,” says Can. “They cook together with the residents, provide them with medication when they need it, and assist them with their personal hygiene.” But what makes this situation particularly special, he says, is the fact that the caregivers try as much as possible to maintain the everyday routines that the residents are familiar with.
In summer, they like to sit on the terrace with their families and friends and drink a glass of black tea or a cup of moka, even in the evenings. The residents have converted their small plot of grass into a vegetable garden, where they grow tomatoes, hot peppers, and beans. The residents lovingly care for the plants and pick the crops. They also like to eat late in the evening. “This is what many of them are used to,” says Ergun Can with a smile. He frequently checks in to see how things are going at the residence – whether everyone is happy, or if they need new chairs.
Good intermediaries instead of glossy brochures
“There is already lots of great support for dementia patients with migrant backgrounds,” says Can. The problem is simply that the affected individuals often don’t know anything about it. They wouldn’t necessarily look at the glossy brochures found in some government office or other. What is needed instead, he thinks, are well-connected, respected intermediaries who can go to the people concerned and give them information. And stakeholders who communicate with one another. This is also how Amalia Stachera received help. The 85-year old woman lives in a senior citizens’ center run by the Arbeiterwohlfahrt (Workers’ Welfare Association ‒ AWO) Baden-Württemberg. Caregivers there described her case to the Evangelische Gesellschaft Stuttgart (Stuttgart Protestant Society ‒ eva). The group is also part of the DeMigranz network and offers outpatient support through native-language caregivers (ProMi). Their volunteer helper, Eva Krupski, visits Amalia Stachera twice a week for two hours. She chats with the older woman in Polish, translates letters, checks to see that her refrigerator is well stocked, and goes with her to shop, take walks, and eat ice cream. Eva Krupski places the orders, then the two women enjoy their ice cream together.
The Robert Bosch Stiftung wants to find the best way of dealing with the illness and helping those affected and their families in their "life with dementia".