Alzheimer’s researcher explains: “Your own reality does not match the reality from outside”

It starts with funny mix-ups and forgetfulness. Then: the diagnosis of Alzheimer’s. Our author experienced it herself in her family. She now spoke to an Alzheimer’s researcher about the role of relatives and current research results.

The number of Alzheimer’s diagnoses has increased in recent years. Likewise the deaths. Estimates of the German Alzheimer Society according to By 2050, 2.4 to 2.8 million people in Germany will suffer from Alzheimer’s. That is up to a million more people affected than there were in 2022.

Alzheimer’s is the most common form of dementia, which unfortunately many families are familiar with. In my case, it was my grandfather who increasingly called me by my mother’s or my brother’s name. Who had forgotten that we had arranged to meet, who often got lost. Normal signs of aging, I thought. Or the first signs of Alzheimer’s?

It’s like a new world for those affected

“Of course, changes in memory are normal as we get older; everyone forgets a word, an appointment or where they put things. It’s just that then you remember again,” explains Dr. Anne Pfitzer-Bilsing, working at Alzheimer Research Initiative eVthe largest private sponsor of Alzheimer’s research in Germany.

The crucial difference in the disease is that Those affected can often only organize their everyday lives with notepads and entire contexts of meaning are lost. “Then the key may be found again, but it is no longer clear to those affected what it should be used for. Everyday routines are suddenly no longer easy,” she says. This means that the rules of your favorite board game would no longer apply and, worse still, the stove would not have to be turned off. “It’s like a new world for those affected. This also leads to those affected increasingly withdrawing from social life and no longer actively participating in conversations, often out of shame or insecurity,” describes the researcher.

Alzheimer's researcher Dr.  Anne Pfitzer-Bilsing

Alzheimer’s researcher Dr. Anne Pfitzer-Bilsing

© Sabrina Less

Over time, all of these symptoms actually applied to my grandfather. While at first we thought, ‘Oh, that’s just the typical one Forgetfulness in old age’, over time the question arose as to whether his behavior was based on a brain disease. Today I ask myself: Should we have taken him to his neurologist sooner?

It is important to react early to avoid further damage

Dr. Anne Pfitzer-Bilsing recommends visiting a doctor as soon as those affected or their relatives are worried. An early examination is particularly important for a differentiated diagnosis because there can also be completely different causes for the signs: “Depression can include Alzheimer’s symptoms, age-related intracranial pressure or vitamin deficiency diseases.” Everything can be treated, explains the expert, “but it’s important to react early to avoid further damage.”

The doctor prescribed medication for my grandfather and things got better for a while. But we didn’t notice a big change. Rather, it depended on the day’s form as to how much he noticed. Participating in conversation and remembering what he had for lunch yesterday. From a medical perspective, can’t we do more? Why is Alzheimer’s still incurable?

“In recent years, many drug studies have failed, and some pharmaceutical companies have completely withdrawn from Alzheimer’s research,” reports Dr. Anne Pfitzer-Bilsing. Nevertheless, there have been slight successes recently: a new generation of active ingredients in the form of antibodies. “Two of them have already been approved in the USA, which actually target one of the possible causes, namely amyloid deposits. However, it is important to know that these antibodies cannot cure Alzheimer’s, but only slow down the progression of the disease. And that the antibodies “They are only suitable for a very small group of those affected because they can only be used in the very early stages of Alzheimer’s disease. In later stages there is no longer any success,” said the researcher.

This drug has not yet been approved in Europe; the European Medicines Agency is still examining the application for approval. The expert is certain that combination therapy is needed to cure Alzheimer’s. But it will probably take at least ten years until then. A long time, but at least one with hope.

What can we do today?

Waiting until then is not an option for those affected and their relatives. As my grandfather’s illness progressed, it became increasingly common for him to no longer remember current events. Instead, vacations or stories from his professional life suddenly appeared. This is typical, as the Alzheimer’s expert explained to me: “There are deposits of proteins in the brain that are responsible for the fact that the connections between the nerve cells die first and then the nerve cells themselves. And this is the first thing that affects people affected by Alzheimer’s the brain areas of short-term memory. The information that is stored in long-term memory is retained for even longer.”

From then on we talked a lot about the past. I no longer gave wine for my birthday, but instead gave books and photos. I would have liked to do more, but it was becoming increasingly difficult for me because communication was now barely working.

Nevertheless, Dr. Anne Pfitzer-Bilsing, how important it is to be there. And that relatives (and those affected) can certainly do something: “The most important thing is to train your mental abilities. Relatives can work with those affected to train their memory by playing word games, doing puzzles, adding pictures or completing series of numbers.” What’s also good: biography work. Look at old photos together and let the person affected tell them and remember what happened in the situation happened. And as long as it’s physical, take short walks. “All of these points have something else in common: the social component. You should continue to deal with those affected and not let them become isolated, as that would be a driver of the disease. Relatives can also allow those affected to participate in their normal everyday lives as much as possible.”

And if they don’t want that?

However, accepting help is not easy for everyone. Suddenly you can no longer do it on your own, which has been easy for the last fifty years – I’m already dreading it, if I’m honest. Luckily, my grandfather always remained friendly towards me. Almost a little childlike in his old age. But he was even better able to discuss things with others, or rather say “no” and act stubbornly. Not uncommon, as his neurologist assured.

And also Dr. Anne Pfitzer-Bilsing agrees: “We know from those affected by Alzheimer’s that anger sometimes arises.” Understanding helps to cope with the situation. “It is very important that those around you understand what situation the person concerned is in at the moment. Basically, it is a new reality that is emerging. You can imagine it like locking your suitcase in a locker at the train station, then going out and looking at the city, coming back in the afternoon and then not only is your suitcase gone, but these lockers don’t exist either. This is the everyday life of those affected. Great insecurities arise because one’s own reality simply does not match the reality from outside.”

Instead of correcting the person affected or reacting in annoyance, relatives can get involved in the person’s own world. Simple language, simple yes-no questions and plenty of time also help with communication.

Separate good and bad memories

As a result of my grandfather’s behavior, but also physical changes, over time there were more and more moments that I now remember as unpleasant. When I met Dr. Anne Pfitzer-Bilsing spoke, I often saw his face in my eyes. Beautiful, but also bad pictures. The expert has tip for me: “Basically, it’s about staying emotionally connected. To still see the person as the person they were before. Memories often help, for example looking at photos together or listening to old songs.”

So after this conversation I sat down with the sounds of the “Bird Wedding”. And looked at old pictures. Wallowed in beautiful memories.

Have you ever wondered what Alzheimer’s looks like from the perspective of those affected? The photo exhibition “Fading Memories” by the Alzheimer Research Initiative eV is a project that is dedicated to this question. With works of art that fade like memories, the illness is intended to become more tangible in an artistic way. There are exciting insights here:

Bridget

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