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4. Workshop – “Understanding Dementia“
We made good progress in the laboratory and learned a lot more about Alzheimer’s disease. In order to better understand about the psychosocial aspects of the disease, we invited an expert with experience working with Alzheimer’s patients to talk to us about them: Dr. Helga Schloffer, Clinical Health and Industrial and Organizational Psychologist.
After we got to know each other, we discussed the origin of Alzheimer’s. Dr. Schloffer told us the story of Alois Alzheimer and his patient, Auguste Deter. Then we came to the topic of our workshop: the social interactions between Alzheimer’s patients and their social environment.
We split into three groups. The first group had the task of “designing” an elderly lady, who would eventually be led through the various stages of dementia. The two other groups drew up the two people closest to this woman, namely her granddaughter and her son. We named our elderly woman Rosa Haderer, and made up her life story, so we could picture her better. The purpose of this exercise was to illustrate the changes in the social environment of a person suffering from Alzheimer’s and to see how quickly the disease can cause everything to change.
Some of us worked on creating Ms. Haderer’s broader social circle, e.g. her life partner, her best friend, the priest at her church, the saleswoman at the grocery store, a gardener, a pharmacist, a neighbor, etc. The closer a particular person was to Ms. Haderer, the closer the person was on our drawing. We designed the constellation of her relationships to represent the time before she was diagnosed with the disease.
Then, Dr. Schloffer told us about the mental decline of our Rosa Haderer. She is becoming increasingly more forgetful and misplaces her jewelry, which her son finds in the most unlikely places. Rosa constantly blames other people. She forgets her doctor’s appointments and even her weekly tea date with her best friend. “Yes, Grandma is no longer the youngest person around,” explains her granddaughter about her odd behavior. She forgets to water the flowers and feed her beloved cat. Finally, her son wants to take her to the doctor, because he already suspects that the cause of her behavior is Alzheimer’s disease. But Rosa Haderer strongly refuses. “I don’t need your help. I’m not stupid.” She becomes increasingly more aggressive and seems overwhelmed by daily tasks. Finally, the diagnosis was clear: Ms. Haderer is in the early stages of Alzheimer’s.
At the beginning, it was hard for some of us to comprehend why people with the disease deny their ever worsening condition and pretend that everything is fine. But after a time, it became clear to us that the patients themselves often don’t know what is happening to them and are sometimes very scared.
Since none of us could really imagine how a test to diagnose dementia works, Dr. Schloffer showed us a short sample of an Alzheimer’s test from the “Mini-Mental State Examination.” We split up into teams of two and readjusted the sceneaccordingly. One team took on the role of the tester, who would “test” the others. We found that even though the questions are quite easy for a healthy person to answer, they still made us sweat, because we didn’t want to answer the questions wrong. We initially found it strange that some people could have problems drawing a clock.
Finally, we thought about how the social circle of Rosa Haderer that we created would change in light of her diagnosis of Alzheimer’s disease. We asked ourselves: “How can families and partners deal with this situation? Are they prepared to care for Ms. Haderer or would she be better cared for in a home?” This question is asked quite frequently after the diagnosis of Alzheimer’s. We each tried to put ourselves in the position of a relative and think about how we would handle the situation. We resolved together that Ms. Haderer should move in with her partner, because he had enough time and patience to care for her around the clock. We decided that the rest of the family would move closer together and support Ms. Haderer no matter what. We made the following changes to our picture of her social circle: good friends and acquaintances became increasingly distant, as they couldn’t cope with the new situation. At the same time, the doctor and caretakers got closer to Rosa Haderer. The priest became more important,because our Ms. Haderer was a very religious person. It wasn’t easy for us to witness howher everyday relationships faded away.
Furthermore, we tried to identify the stages of Alzheimer’s that Rosa Haderer exhibited. We realized that the borders between the stages are quite fluid and the divisions rather arbitrary. Together, we made a big poster of the stages of the disease and had a second discussion with Dr. Schloffer about the different characteristics of each stage, according to the textbook.
“How is it, when you have to communicate without speaking?” asked one of us in the room. In the advanced stages of the disease, patients often cannot speak anymore and have to communicate with their caretakers in other ways, e.g. through body language. We wanted to try this out. We again split upinto teams of two and stood back to back. One person closed his or her eyes and was not allowed to speak. The first hurdle was to figure out without speaking who was going to be the leader and who was going to be led. Most of us were more comfortable being guided around, because we could lean back and it turned into a test of trust. Being the leader tended to be more difficult, namely, because the leaders had to be really good at guessing when a certain movement made the other person uncomfortable.
A particular difficulty in dealing with Alzheimer’s patients is that their own will naturally must always be taken into account. As the disease progresses, patients become increasingly more insistent in expressing their wishes and even feelings. The mental state of Alzheimer’s patients can vary greatly, because they primarily focus on the present situation. The mental capacity of an Alzheimer’s patient is actually comparable to that of a small child. While it is never easy to deal with such mood swings, it is still an important skill to have.
It is especially important to treat an afflicted person with respect and patience. Discussions should be avoided, but to get a conversation going, it is helpful to ask questions about the past. Finally, it is also important to be sure not to speak in a complicated or unclear way. We found these tips very useful during our visits in the nursing home and the geriatric ward.
Film Screening: “Ilse, Where Are You?”
“Ilse, Where Are You?” is a 45-minute documentary directed by Ulrike Hamschlager. She filmed her mother during her struggle with dementia from 2002 to 2006, the last years of her life. The film is made with a lot of love and sensitivity. It gives a good look into her mother’s “world of forgetting.” The film presents the progression of the disease in a very impressive way. Without mincing matters, Halmschlager shows the worsening condition of her mother in all forms until her death. There are also happy and loving scenes, in which, e.g., Ilse’s daughters and the Slovakian caretakers appear. The film also shows many childhood, youth, and family photos, which creates a very moving profile of a woman.
The film “Ilse, Where Are You?” is definitely helpful for relatives of people with dementia, because it does a good job of showing how afflicted people should be perceived and integrated, despite all of the difficulties.
This year’s GBT project team had the opportunity to talk about the film “Ilse, Where Are You?” in person with Ulrike Halmschlager. At the end of the screening at our school, we were allowed to ask the director all of our questions. The screening itself was a real rollercoaster of emotions. The film triggered different emotions for each of us, from sadness to joyfulness to love.
After the screening of the film, the whole team was quite taken aback. Ms. Halmschlager told us to close our eyes and asked us some questions, e.g. “How do you feel after this film?” “How did it affect you when Ilse’s condition worsened?” “Did the film change your view of people with dementia?” Ms. Halmschlager’s questions got under our skin and created a special atmosphere in the darkened room that for some of us, made our hair stand on end. For this reason, we felt very relieved to find that we were allowed to express our own feelings about our experience watching this particular film.
Finally, we were allowed to ask the director our own questions. First, we asked her about her personal point of view of the film and what it was like for her during the years 2002 to 2006. Finally, we wanted to know how she deals with criticism of the film. She explained to us that critics would seeher film as a violation of privacy. They argue that the film was made without the full consent of the protagonist and that it’s just not right to show the deterioration of her own mother on a movie screen.
The film gave us another vivid picture of dementia. This documentation raised many questions and will definitely give us something to talk about in the future. Even though the film was mentally taxing for some of us, we were able to process it well, particularly by talking with Ulrike Halmschlager, and we became richer due to this valuable experience.
Since we were handling such a formidable topic for our school project and had dealt with it intensely, we liked to talk about the things we had learned at home. When I spoke with my parents about the topic of Alzheimer’s, my mother and my father had very different reactions. At first, my mother couldn’t imagine that an afflicted person could have such a large effect on a family. The topic of dementia was new territory for her, so she held back a bit at the beginning. I told her about the progression of the disease, from the first symptoms, such as slight trouble concentrating and forgetfulness, to the later stages. We talked through the characteristics of each stage together.
At first, my mother couldn’t imagine that an afflicted person could have such a large effect on a family. The topic of dementia was new territory for her, so she held back a bit at the beginning. I told her about the progression of the disease, from the first symptoms, such as slight trouble concentrating and forgetfulness, to the later stages. We talked through the characteristics of each stage together.
The most important question of this evening was who would be the main caretaker in a case of emergency. My mother thought this question was easy to answer. She said that it would certainly be the responsibility of the children “to change the parents’ diapers;” afterall that’s what the parents had probably done for their children. However, my father thought that the question of who would take on this task responsibly could only be answered with more information of the actual situation. The decision would depend on the stage of the disease, the work lives of the family members, and the financial situation of the family.
“Is it too much to ask that the children care for their parents, when they suffer from dementia?” This question started a very long discussion that I will keep in my mind even longer.