A new study by the VdK community association shows that many people looking after their relatives at home are under a lot of stress. Nevertheless, a number of assistance services under the nursing care insurance remain unused. Why?
Dr. Andreas Büscher is Professor of Nursing at the Osnabrück University of Applied Sciences and Scientific Director of the German Network for Quality Development in Nursing (DNQP). He conducts the VdK nursing study “Care at home – between desire and reality”. Here he explains and gives advice on how caregivers can find relief and support.
Prof. Büscher, you and your team surveyed over 27,000 caring relatives. What is their weight?
More than a third of people caring for loved ones at home feel extremely stressed and can only cope with a caring situation with difficulty or not at all. Most family caregivers neglect their own health.
Is there a home care emergency?
Home care has long been tight. Of the four million people in need of care in Germany, 80 percent are looked after at home. Relatives take on the lion’s share of caring work. The system would collapse immediately if relatives stopped doing this. Caring relatives need a professional sector to benefit from meaningful assistance. We need to connect these two areas better. There is a lot of potential there.
Not everyone who cares feels burdened. What factors contribute to this?
There are a number of objective stress factors. They are physical, psychological, emotional or financial; for example, if mobility is restricted and the person in need of care has to be raised and manual work done, it is a burden; on other farms it is more of a mental handicap. Of course, people tick differently and have different resistances. It has been shown that people with low immunity often experience high levels of stress when caring for others.
In what cases are relatives particularly affected?
Caring for a loved one with dementia or depression is often difficult. Statistics also show that with a high level of care, the burden is often heavy. Even when the family constellation is tense and conflicts arise in the family, relatives bear a particular burden.
Since the burdens are so heavy, why is the nursing care insurance support service often not used?
First, lack of knowledge. Dependent people and caring relatives can obtain information on benefits from the long-term care insurance fund. But no one tells them exactly what it is. The study clearly showed that councils make a difference. Anyone who uses advice benefits from far more support services.
What can a consultation do?
All of these support services are very abstract. When people find themselves in a caring situation, they often have no idea how the various services that are appropriate for their situation work and where to apply for them. You can read it yourself, of course, but those who care don’t have time because they have to care for their loved ones. Counseling is very helpful for most people. Home visits are often possible.
Virtually every person in need of care and a caring relative has the right to receive advice. So why isn’t this happening?
Care advice was ingrained in nearly 15 years ago. It was a great idea, but each state treats it differently. We have a mosaic of options. Long-term care insurance, long-term care bases or nursing services exist – it is often not easy for relatives to find out where they can get advice. In addition, many people are reluctant to take care of the topic of care.
Why is it so hard?
Nursing is an intimate service because you put yourself in the hands of strangers. First, you have to cross the emotional threshold. Once that’s done, it works pretty well in many cases. People who use support services are very satisfied with it.
Are there caring services that are particularly helpful?
You cannot generalize as it always depends on the individual situation. For example, if relatives and people in need of care do not live in the same household, outpatient care is much more important than living together. And if you live in a household, offers of assistance such as foster care are often more helpful. You need a differentiated view of it – and as a layman you often can’t afford it.
Are the services left unused only because of a lack of advice?
No, a common reason is that people are afraid of co-payment. Most carers who already use support services want more. What is holding them back is cost. Sometimes, however, these are only alleged costs.
How can you see it better?
Advice helps here too. Care counselors know the budgets of individual support services and can show where and how they can be used or aligned with each other.
Are there any other reasons that prevent you from using the services?
There is often a shortage of free capacity. Outpatient care cannot extend the hours, short-term and day care have no vacancies due to a lack of staff.
The VdK demands that every person in need of care be entitled to a day care place. How is this supposed to work if there is already a shortage of staff?
If we need a daycare place for every person in need of care – that’s more than 3.2 million people – that’s not an overnight feasibility. It is also unimaginable in the medium term. But the question is how do we want to deal with care. I do not think the request is unfounded. This is an analogy to the right to a nursery. Caring is a society-wide issue – and requires comprehensive reform. If relatives can’t go on anymore, what is left? Imagine 3.2 million people would have to go to nursing homes. There is also a shortage of staff and then we have a real emergency.
What is needed to strengthen family care?
It would certainly be easier if the services were combined into a budget that loved ones could use flexibly. But that doesn’t solve the main problem because you need to know what to spend the money on. The most important thing is advice – preferably at the beginning. When the statistics talk about care and the four million people in need of care, we pretend that this is a permanent group of people. But every year about a third fall off and a third comes out. Each year, over one million people are looked after. You and your family are new to this situation, usually without prior knowledge.
What is your advice to family caregivers?
Find good advice, use it regularly, and talk to others about caring. At best, this creates new networks that can make everyday life easier.