Living with Alzheimer’s: “Your own reality does not match the reality from outside”

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 forgot that we were on a date, who often got lost. Normal signs of aging or the first signs of Alzheimer’s?

Of course, memory changes are normal as we get older; everyone forgets a word, an appointment or where they put things. It’s just that you then remember where all these things are or that you forgot an appointment.

Things are different with Alzheimer’s: “Those affected by Alzheimer’s disease 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. Suddenly, everyday routines are no longer easy, things that were always done that way before. For your favorite board game, for example, the rules are no longer applicable. And then there’s more: the stove doesn’t turn off. People no longer know what season it is. 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,” explains Dr. Anne Pfitzer-Bilsing, who works at the Alzheimer Research Initiative eVthe largest private sponsor of Alzheimer’s research in Germany.

Not at the beginning, but 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. How much he could help it, how he behaved. Today I ask myself: Should we have taken him to his neurologist sooner?

If someone is worried, either the person affected or their relatives, then a medical appointment is definitely recommended and is very important for a differentiated diagnosis because there can be many other causes for the symptoms. One depression can include Alzheimer’s symptoms, age-related intracranial pressure or vitamin deficiency diseases. And all of that can be treated. But it is important to react early to avoid further damage.

The doctor prescribed medication for my grandfather, which made things a little better for a while, but we didn’t notice any major changes. Rather, it depended on the day, how he felt, how much he noticed, how much he took part in conversations and how he remembered what he had eaten for lunch yesterday. From a medical perspective, can’t we do more? Why is Alzheimer’s still incurable?

“In recent years, many active ingredient studies have failed, and some pharmaceutical companies have completely withdrawn from Alzheimer’s research. However, there have been slight successes recently: There is a new generation of active ingredients, namely antibodies. Two of them have already been approved in the USA, which really target one of the possible causes, namely the 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 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 you no longer see any success,” says Dr. Anne Pfitzer-Bilsing. However, this drug has not yet been approved in Europe; the European Medicines Agency is still examining the application for approval of a form of the antibody. 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 often not an option for those affected and their relatives. As my grandfather’s illness progressed, it increasingly happened that he no longer remembered current events, but still remembered previous vacations or his job. Totally typical, as the Alzheimer’s expert explained to me:

There are deposits of proteins in the brain that are responsible for the fact that first the connections between the nerve cells die and then the nerve cells themselves. And in those affected by Alzheimer’s, this first affects the brain areas of short-term memory. The information stored in long-term memory is retained even longer.

We talked a lot about the past, and I no longer gave wine for my birthday, but instead gave me 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, the expert emphasized how important existence is and what relatives (and those affected) can do: “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 is also good is biographical work. You look at old photos together and let the person affected talk and remember what happened in the situation. As long as it’s physically possible, short walks are also helpful. And all of these points bring together something else important: 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 sometimes anger or aggression 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 keep this in mind and get involved in the person’s own world. Also using simple language , simple yes/no questions and a lot of time help with communication.

Separate good and bad memories

Over time, my grandfather’s behavior, but also physical changes, resulted in more and more moments that I now remember as unpleasant. When I met Dr. When Anne Pfitzer-Bilsing spoke, I often had his face in mind. Beautiful, but also stupid pictures. The expert reveals a tip for this: “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 the conversation, I sat down with the sounds of the “bird wedding” and looked at pictures, reminiscing. A beautiful and intimate moment, which I will definitely repeat.

I will also sleep, eat healthier and learn a new language

There are a lot of things on my to-do list, but to avoid getting Alzheimer’s myself, I’ll add to it. The expert emphasizes that your own risk of becoming ill can be reduced by a full 40 percent: “In early life, the most important thing is education so that the connections in the brain are formed. As young people and adults, you can then increase your mental fitness, by reading, learning a new language or a musical instrument. Of course, that also depends on what you enjoy. This is what comes with it physical fitness and a healthy eating with few sausage products, lots of fruit and vegetables, many polyphenol-rich foods such as blueberries or red grape juice and lots of omega-3 fatty acids, which are found in olive oil, walnuts and flaxseeds. It is also better to prepare food fresh; ready-made foods often contain too much salt.

And what is particularly important is one Healthy sleep, because it breaks down the harmful protein deposits that form in the brain during Alzheimer’s. On the day you should look that you are social environment is not neglected. Other illnesses such as high blood pressure, diabetes or depression should definitely be treated.”

At first glance there are many, but actually simple options that we can easily combine and integrate into everyday life.

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