How do you avoid being let down

Often left in the lurch

BERLIN. She is incontinent, refuses to go to the bathroom regularly, and then pees. She insistently repeats the same meaningless sentences, insults her daughter, accuses her of theft, behaves unfairly, is extremely moody and unpredictable - everyday scenes from the life of a dementia patient.

Your daughter, the caregiver, can no longer take the pressure. She no longer has any strength and urgently needs support.

Over three million people in Germany are in need of care within the meaning of the Social Security Code. Three quarters of them are cared for at home - 1.4 million of them exclusively by relatives.

If there were a hit parade of truisms in health care, the sentence “Caregiving relatives must be better supported” would be at the top.

The work of these relatives is the foundation of the German care system. With their care, support and care services, they play a major role in the quality of life, especially for elderly and disabled citizens.

Since the shortage of care workers in the professional care sector cannot be resolved in the foreseeable future, there are many indications that family care is becoming more important as a result of the demographic aging of the population.

Is it just permanent political hypocrisy?

But what has actually changed in the past two decades with regard to the support of caring relatives? Nothing at all, except permanent "hypocritical assurances" by politicians that something must finally happen?

Dr. Martin Schölkopf from the Federal Ministry of Health at the capital city congress.

"If someone is of the opinion that what is offered in terms of help is not enough, he can do that," said Schölkopf. But the claim that the state did nothing at all is simply wrong.

For example, since the introduction of the new definition of long-term care in 2017, people with dementia and their relatives have received special support. You have equal access to all long-term care insurance benefits.

"Pressure in the boiler"

State Secretary Andreas Westerfellhaus, authorized caregiver of the federal government, sees further need for action with regard to the support of caring relatives.

At the capital city congress he spoke of “pressure in the kettle” and urged support: “You can only move things and get them through in political committees if you can feel a broad tailwind from society.”

Relatives who care for dementia patients still feel too often abandoned. A study by the Center for Quality in Care (ZQP) on aggression and violence in informal care from 2018 highlights their everyday problems.

Forty-five percent of those surveyed reported that they had been subjected to psychological violence by the people who cared for them within the last six months - for example by shouting at or insulting them.

Eleven percent had also experienced physical violence, such as rough handling or hitting. Relatives of people with dementia stated that they had been confronted with violence more often than those who looked after patients with other clinical pictures.

Relatives get sick themselves

The other side of the coin: relatives of dementia patients themselves tend to be more violent. 32 percent reported having used psychological violence against the person in need of care during the period surveyed. Twelve percent even admitted physical violence.

For many relatives of dementia patients, their physical health deteriorates during care and they need medication more often, reported Sabine Jansen, chairwoman of the German Alzheimer Society: “Friends, acquaintances or family members break off contact, hobbies are given up, sometimes even the job. "

The relatives have the right to individual care advice from the care insurance funds, to support for everyday care at home, to short-term and preventive care, supervised vacation and rehabilitation stay - but this often does not have a direct impact on their everyday life.

Placing the patient in a nursing home is also not an option for them. Only four percent are considering this step. According to a study by Infratest Sozialforschung, the home, which would solve many problems, is never an option for every second carer, no matter how things develop.

More and more people with dementia

Sabine Jansen from the Alzheimer Society sees another major challenge beyond the problems of home care. Half of the patients in general hospitals are older than 60 years, around twelve percent are affected by dementia.

Everything, according to Jansen, indicates that their share will increase considerably in the future. When sick people are admitted to hospital because of a broken bone or heart disease, dementia is usually just a secondary diagnosis.

Often dementia is only noticed during the stay in the clinic, sometimes not at all, she says.

Many hospitals have so far been inadequately or not at all prepared for people with dementia. The need for action is increasing, warns Jansen: "The challenges for the future are getting bigger and bigger."