The twenty-one-year-old who moved into a care home

In "Der Einundzwanzigjährige, der freiwillig in ein Pflegeheim zog und von seinen Mitbewohnern mit Demenz gelernt, was Menschlichkeit bedeutet", he wrote about his experiences in this sensational experiment and has since been constantly campaigning for a different way of dealing with people with dementia - including at ConSozial. In this interview, he reveals what we can change as a society.

Mr Toebes, what makes a young person voluntarily go into a locked ward?

At the age of 21, I decided to live in a locked ward for people with dementia because I am very concerned about the future of people with dementia.

It is precisely by giving a voice and listening to people who currently have no voice that we can achieve this change. Not by organising a care system based on our assumptions about people's needs, but by supporting people with their needs. I am confident that we can change our future.

How has living with people with dementia shaped you in three and a half years, what have you learnt?

After living with people with dementia during this time, I have learnt that we hold the key to change in our own hands. During these years, I was able to build wonderful friendships and became very fond of my flatmates. At the same time, however, I have also experienced the pain of my flatmates on a daily basis. The current image of dementia is pitch black and the care home is an exclusionary system based on the disease. If this does not change, we cannot expect quality of life to be the outcome and the goal.

When we listen to people with dementia, it becomes clear that while dementia can be disruptive, much of the pain that people experience (e.g. no longer being seen as fully valued, experiencing social exclusion) is not caused by the dementia, but by the way we as a society treat people. On the one hand, this is painful to hear, but on the other hand it also gives us hope for what we can change as a society. That's why I believe that dementia is not a problem of the healthcare system, but a problem of society.

You say that we have the basis for change, we just need to adopt a different perspective. What do you mean by that?

Our own way of thinking is the biggest obstacle to this change. At the moment, we often see people with dementia as "the other" who can change. I believe that if we start to think differently, we will also act differently. If we see people with dementia not just as a loss, but as people like you and me, our whole approach will change. A different view of people is the basis.