Without therapy in a retirement home: young people in need of care quickly find themselves sidelined

Many push the thought of their own need for care far away. That lasts until you’re old. But for years the number of younger people who have to be cared for after serious illnesses or accidents has been increasing. Many end up in retirement homes, although experts say that is the worst option.

Nursing homes are places for old people. This is how many would like to see it. However, almost 17 percent of nursing care cases in Germany are under 65 years of age. Most of these dependent people are cared for at home. But there are not always family members who can afford this. Then accommodation in a nursing home is also the only option for these younger people.

Some nursing homes now have wards that specialize in “young care”. Mostly people between the ages of 20 and 65 who are in need of care after accidents or illnesses such as ALS, multiple sclerosis or a stroke are admitted and cared for here. They are people like Sandra, who is paralyzed on one side after a severe stroke and can no longer speak. She is not even 50 years old and has been bedridden for several years.

The investigative reporters of the RTL program “Team Wallraff – Now more than ever” get to know the woman in Alloheim Brunswick in Braunschweig. For about three years, the home has had a ward specializing in young people in need of care. Spread over two floors, 22 residents live here, most of them with the highest care level 5.

Rising demand

“Long-term care insurance is strongly geared towards the care of old people,” says Stefan Nolte ntv.de. Ten years ago, he started building care facilities for young people in need of care for Malteser. “People who are much younger weren’t thought of for a long time.” The demand has been increasing for years. “There are more people in such a life situation who are independently looking for a supply idea,” observes Nolte.

According to experts, care facilities are not necessarily prepared for these people. “An old people’s and nursing home is the worst option when a young person comes into this system. Nothing fits together, neither the living environment nor the daily routine,” says Nolte. This is also confirmed by Anna Pape and Sarah Bremer. In 2017 you studied at the University of Applied Sciences Emden/Leer her bachelor thesis on the special requirements written that would be needed to provide better care for young people in need of care. Their guiding principle was “A home is not a hospital. A home is a place to live”.

The two occupational therapists each had key experiences with young people who had ended up in old people’s homes. With Pape, it was a young man whose arms and legs were paralyzed. The senior citizens in the home often did not want him to take part in the offers in the home. “They liked him, but he was just too quick in their heads,” Pape tells ntv.de. Bremer cared for a patient in his mid-40s who was in need of care after a motorcycle accident. “He had a wife and children, but the family was overwhelmed with taking care of him at home with hemiplegia,” Bremer recalls. The fact that he could no longer live in his own house, sit in his garden and was instead only among the elderly made the patient lose all will to face life.

Not fundamentally more lucrative

The two occupational therapists see separate premises, at least one ward of their own, or even better their own facilities, as a minimum requirement for “young care”. Nolte is also convinced that anyone who wants to set up an area for young caregivers must break with the old people’s home logic. Although the living environment also consists of individual rooms for young people in need of care, it must offer more design options, for example with furniture or pictures. The common area is also particularly important, “where you can not only eat together, but maybe also cook, watch films or celebrate”. Nolte, who has already opened the third facility for young people in care, considers it particularly important to respond to the technical needs of those in need of care. “You have to be able to offer everything that the modern digital world demands.”

In their study, Pape and Bremer pointed out that many possible furnishings or features are not enshrined in law, which leaves a lot of leeway for nursing home operators. “For reasons of economy, only the bare essentials are often installed in this area,” they write.

The Alloheim Brunswick demands 5380.18 euros per month for a care place for seniors in the highest care level. The fee for the home on the “Young Care” station is estimated at care level 5 at just under 6,000 euros. However, the nursing home operator Alloheim emphasizes to RTL that it is not primarily about additional profit. Stefan Nolte from the Maltesers makes it clear that “Young Care” is basically no more lucrative for the provider than a classic old people’s home because the offer also includes more services. “If that’s not the case, you have money left over, but I don’t think that’s serious.”

There are hardly any personal belongings in Sandra’s room in Braunschweig, mostly the television is on. The occupational therapists Pape and Bremer draw a clear conclusion in their work. Sparse and impersonal rooms mean that “residents don’t feel comfortable and the recovery process is delayed as a result”. Another essential factor for good care is therefore adequate and individually adapted therapies. Then, in the best-case scenario, the need for care can even decrease again.

Activating care takes time

The nursing home operator in Braunschweig justifies the cost of a home with the “larger range of therapies, which is ensured by in-house occupational therapists”. At the time of the RTL shooting, however, the therapy room was hardly used. Nevertheless, when asked, Alloheim emphasizes “that the therapy room is regularly used in accordance with the therapy plans of the occupational therapists”.

“Activating care takes longer,” explains occupational therapist Bremer. “If an 85-year-old sits on the shower stool and gets showered, it might take five minutes. If someone does shower training to get that ability back, it might take 25 or 30 minutes.” In many institutions, however, this fails due to the scarce staff. Nolte therefore envisages that not only the nursing care fund is used for financing. “I believe that it makes sense to work together across departments and social codes, i.e. to use claims that a young person also has from other sources.” In his opinion, the integration or the handicapped aid come into question.

According to the Barmer care report from 2017, the most common illnesses in young people in need of care are paralysis of the body, but also intellectual disability, epilepsy or Down syndrome. Younger people who, for example, were on the verge of a serious accident with both feet in life, were employed or traveled a lot still have a clear picture of how they imagine their life to be. Occupational therapist Anna Pape envisions care facilities with WiFi, where residents can play Playstation and plan the next day individually on their tablet. Sometimes they can sleep longer, sometimes it starts early – for example on an excursion. There are parties and nurses specially trained to care for young people. It’s still a dream of the future, nursing is one of the permanent political construction sites.

Sarah Bremer and Anna Pape did not let go of the topic even after completing their studies. “We are concerned when we treat young patients and they are released into a retirement home,” says Bremer. Sandra, who was artificially fed at the beginning of the RTL shooting in Braunschweig and did not speak, now has a new supervisor. She made sure that Sandra got picture cards to promote language. In addition, Sandra can eat independently again. It is the best proof that promotion and support for young people in need of care in rehabilitation are always positive developments.

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