How I found a better understanding of Alzheimer's as a relative.

In preparation for an interview, I have spent the last few weeks looking into the topic of dementia in depth.

Actually, we already know quite a lot

Much has been said and written about Alzheimer, and demenzworld and the included Navigator provide indispensable information, guidance and support.

If you would like to delve deeper into the topic of prevention, we recommend this Lancet article. The NZZ has recently devoted several substantial articles to this important topic, for example here or here. Peter Attia also publishes regularly valuable insights on preventive aspects of Alzheimer's in particular. Last but not least, the World Alzheimer Reports are certainly informative for frequent readers.

However, as a relative of an affected husband or father, you don't really have time for all that. That's why I want to share three concepts that have helped me quite a lot over the past few years in caring for my father, understanding him and somehow making peace with this disease. 

What happens with Alzheimer's? The brain as a shelf of books.

Imagine that your brain is a shelf of books. It is completely empty when you are born, and every day memories, concepts or experiences and things you have learnt are added to it. We fill the bookcase from bottom to top. In other words, the most recent memories or contributions are at the top of the bookcase.

Alzheimer's disease now shakes this bookcase. It shakes the top more than the bottom. The top books fall out. These are the things stored in short-term memory. As the disease progresses, books in the centre also begin to fall out. However, we can still remember things from adolescence, youth or childhood. Cycling, singing or playing music are still possible.

Until the illness also shakes the foundations of the bookcase. Nothing works anymore. No everyday life. Hardly any memories of earlier times.

How does Alzheimer's progress? Life as a parable with parallels and important differences between young and old

Let’s imagine life as a parable. We come into the world, go our own way and earn our merits, doctorates and whatever else is waiting for us. With Alzheimer's, this curve begins to tilt downwards. We lose what made us who we are... and become children again.

As affected persons, we are dependent on our relatives, just as we were as children. As affected persons, we go to day care centres like we did as children. As affected persons, as soon as we can no longer be cared for at home, we have to go into a care home. And this is the crucial difference between caring for children and caring for those affected: Relatives are much older or have a busy life with careers and children.

 How does Alzheimer's progress? The smoke screen

In contrast to many other terrible diseases, in the case of Alzheimer's it is extremely difficult to develop hope and courage. With cancer, you can at least decide to fight. With Alzheimer's, you can only lose.

It is not without reason that Alzheimer's is referred to as the "disease of forgetting". But Alzheimer's dementia is more than just a memory problem. I compare the disease to a wall of fog that an affected person walks into. You lose it a little every day. With our eyes open, we lose a loved one. And this fog inevitably gets thicker, visibility gets worse, day by day. There is no going back, there is no light at the end of the tunnel. We have to deal with this fact and, in my opinion, this is where the great stigmatisation comes from.

What are the bright spots for me in everyday life? The improvisation theatre approach

When I was preparing for a dementia meet in Basel a few years ago and my father was still healthy, an expert recommended that I invite an improvisation theatre company. As an event professional, I thought: well, why not, maybe a good idea to break things up before a break. In preliminary talks with the specialists from this theatre group, I soon realised how wrong I was: these specialists teach us to understand life with those affected as improvisational theatre and to live it that way. In the moment, spontaneously and without always wanting to correct the person concerned. Instead: go with the flow. Play along. Laugh, dance.

what now?

Dementia is still a taboo subject. It's no wonder, as there are bad feelings attached to it: shame, guilt, disgust, anger, aggression, to name but a few. But the more and the more openly people talk about it, the better they cope and the more support they receive.

Dementia is a disease, not a disgrace.

I appeal to relatives and those affected to take their responsibility seriously. The responsibility to share their own experiences and make them accessible to other families.