Dementia alzheimer’s disease from the perspective of an affected person

The American psychologist Richard Taylor writes in his book "Alzheimer's disease. I" about his life with the disease. This book is remarkable in several respects. Only a few people affected by Alzheimer's disease speak out in public; the stigma of the disease is still too great: it is easy to think that those affected are completely insane. And even more so, no one writes an entire book in which he describes his situation eloquently, humorously and very reflectively despite memory problems and word-finding disorders. Among other things, Richard Taylor gives very frank insights into the fears that can beset an Alzheimer's patient. He describes his existential fear of the end that slowly creeps into his heart and brain. "Not before the death of my person, rather before the end of the being that I know and others have known." And he also speaks of the humiliations of being helped by other people and the fear of making mistakes. In addition, one also learns how he tries to master the disease with his thinking and writing.

Alzheimer's disease

Alzheimer's disease, Alzheimer's disease/Morbus Alzheimer/Alzheimer's desease

As yet incurable form of dementia, first described by German psychiatrist Alois Alzheimer in 1906. Symptoms initially include mild forgetfulness and orientation problems. Later, for example, there are speech changes and memory loss. The cause is still unclear, but pathological protein deposits occur both between and within cells. Cortical areas are affected.

Stigma

The term refers to a characteristic that is judged negatively by society or by a group, leading to the discrediting of people who exhibit that characteristic. Stigmas can refer, for example, to members of certain ethnic groups or social fringe groups. The diagnosis of a mental disorder or an illness such as AIDS can also be accompanied by stigmatization depending on the social environment.

An unrenovated house in Berlin's Prenzlauer Berg district. It goes up a few floors. "Come in." Rainer Fritsch opens the door to a comfortably furnished apartment in an old building. His wife stands back. Somewhat unsteady in the kitchen. We have one hour for the conversation. Then Birgit Fritsch has to go to a group meeting.

She manages to get there on her own, including the streetcar. By no means a matter of course. The 63-year-old suffers from Alzheimer's disease. Orientation is generally one of the biggest problems for those affected. But in Ms. Fritsch's case, orientation still works pretty well. "I still know where to go," she says in a sympathetic Berlin dialect. However, she immediately qualifies: "Well, I won't go anywhere on my own, where I haven't been yet."

Her group meeting is the Psychosozialer Treffpunkt (psychosocial meeting place). It is organized by the non-profit Alzheimer Society Berlin, which was founded jointly by caring relatives of dementia patients and by professionals. Affected people with memory disorders come together here and do something together. Sometimes she goes to the cinema, for coffee or, as today, to the museum. A trained specialist accompanies the group.

Struggling with the right words

In a personal conversation, one notices how Birgit Fritsch struggles with her memory. Struggling to find the right words. Her husband often takes over for her when she can no longer remember or express herself. For example, she has to think long and hard about the question of what job she used to work in. Again and again, she looks to her husband for help, asking him to answer for her. "Tell me what you have learned," Mr. Fritsch tries to help her on her way. "Well, what was that again??" she asks with a shrug of her shoulders. Not for the last time that day, she nervously slides back and forth.

It is also easy to get confused about this ie. Mrs. Fritsch has had an eventful professional life, working as a druggist and in payroll accounting, among other things. In one of her last jobs, she worked in a toy store. "It wasn't so obvious back then, but from today's perspective, it was already starting to happen at that time," recalls Rainer Fritsch. "The boss used to reproach my wife terribly when she had forgotten something."Even before that, he had noticed in everyday life that she could no longer operate the coffee machine. "I just didn't know how to do it anymore," confirms his better half. She eventually had to give up her last job, an office temp on a 400-euro basis, because she was less and less able to meet the demands.

Memory

Memory is a generic term for all types of information storage in the organism. This includes not only pure retention, but also the reception of information, its order and retrieval.

dementia alzheimer's disease from the perspective of an affected person

Mental abilities diminish

"In the early stages, those affected themselves feel that their mental abilities are declining," says psychologist Christa Matter, managing director of the Alzheimer's Association Berlin e.V. "They find it increasingly difficult to store and retrieve new information in particular. The long-term memory, on the other hand, the earlier memories, are not affected at all at first."

The environment often does not notice the changes. "Those affected still have a lot of knowledge at their disposal and are able to compensate for some mental deficits. They can still manage their affairs and live on their own for the most part."However, the loss of mental abilities can affect the self-image of those affected, can lead to insecurity and also to depressive reactions.

Long-term memory

A relatively stable memory about events that happened in the somewhat distant past. In long-term memory, content is stored almost indefinitely. Different memory contents are located in different brain areas. The cellular basis for these learning processes is based on improved communication between two cells and is called long-term potentiation.

Long odyssey until diagnosis

For the Fritsch couple, the time before the diagnosis was a period of great uncertainty and insecurity. Because he didn't know about the disease, Rainer Fritsch occasionally reproached his wife for forgetting this or that again. "I sometimes started crying then," Birgit Fritsch remembers.

The road to diagnosis was an odyssey from doctor to doctor. For a long time, doctors would have dismissed the suspicion of Alzheimer's disease and tipped the scales toward depression, since this mental illness can also lead to memory disorders. "For a long time, nothing was noticeable to her in conversation," says Rainer Fritsch, looking for an explanation. It was only after several weeks of observations and examinations in a day clinic that the diagnosis was made in mid-2010. "That's when the crying really started," says Birgit Fritsch. But at some point, she said, she began to accept the diagnosis. "Then I said to myself, I'm sure I'm not the only one. And that's the way it is now. I can't change it."

For the Fritsch family, things are easier today in some respects. They now know about the disease. Have adjusted to her together with her son. Mr. Fritsch relieves his wife wherever he can, especially in the household. At the same time, however, the disease has become worse since the first signs. Birgit Fritsch can no longer go shopping. She also has a hard time with the household. When cooking, for example. "Cooking does not work so well. Today we often have to work together.

Depression

Mental illness that occurs in phases, the main symptoms of which are a sad mood and loss of joy, drive and interest.

Increasing memory and orientation problems

In the early days, she still resorted to one trick or another. "In the past, I used to write things down on a notepad." For example, that she still had to go shopping. There were many notes at the beginning. But that wore off at some point. "She probably didn't feel like doing it anymore because she increasingly didn't know how to spell the words," Rainer Fritsch believes. His wife is probably already in the middle stage of the disease. At this stage, memory-. Orientation problems to. "As a result, those affected are usually no longer able to manage their lives on their own," says Christa Matter. "They need help even with simple tasks, such as preparing meals, dressing or caring for their bodies." They are now less able to form complete sentences and find it increasingly difficult to take in messages from others. "Early memories are also increasingly unavailable. Some no longer know if they have children or when they got married."

Birgit Fritsch has problems especially with things that happened a relatively short time ago. "She always asks me: What's on the agenda again today? Who comes to us today?", tells Rainer Fritsch. His wife starts laughing, as there is a lot of laughter that morning. But sometimes the cheerful facade also gets cracked. For example, when Mrs. Fritsch responds to the question of how old she is with complete incomprehension: "What am I?" At this moment, Mr. Fritsch looks very serious, and you think you can tell that his wife's memory problems can still shock him. "Think about it," he prompts her. "What does he want to know now?", Birgit Fritsch asks back. "Your age". She laughs. Not for the first time one has the feeling that she tries to cover up with her cheerfulness also some things. "Over 60 in any case," she slowly feels her way forward. "Unfortunately, already 63," says Mr. Fritsch.

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