Mrs. Zeller is 61 years old at the time of the interview. She is married and has children. She lives with her family in the German-speaking region of Switzerland. Mrs. Zeller works in the health care sector. She has been caring for her mother, who suffers from dementia, for about seven years. She is 87 years old and has been living in a nursing home for five years. Before that, her mother lived alone in a flat. Her mother was 75 years old when a dementia test was done. Mrs. Zeller is the oldest of three siblings and the main caregiver for her mother. Mrs. Zeller has been familiar with illness and care in the family since childhood, as her grandparents and an aunt also suffered from dementia. For her mother, who was a farmer, activity and mobility are very important.
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Mrs. Zeller thinks it is important for relatives to participate in medical decision-making. She feels that high quality treatment requires doctors and nurses to take input rather than decide on their own what medications and medical treatment would be best.
TRANSCRIPT
Frau Tailler
The doctor would have offered great help if he had raised the topic of her husband’s dementia with him, says Mrs. Tailler. As it was, she was unable to address her need for support providing ongoing care.
The doctor would have offered great help if he had raised the topic of her husband’s dementia with him, says Mrs. Tailler. Not calling a spade a spade, she says, is not a relief. Mrs. Tailler believes that people with dementia should be informed about their illness because otherwise negotiating the care situation later on becomes more difficult or impossible. Now, her husband does not appreciate that she needs some formal reprieve from ongoing care.
What helps? - Caregivers' perspective
Frau Ullmann und Herr Thoma
The medications doses are ubiquitously too high, conclude Mrs. Ullmann and Mr. Thoma.
The transition from one institution to another did not work smoothly for Mr. Thoma's father in terms of medication. Instead of relowering the dosage after the transition was completed, he continued to receive the high medication dose, which severely impaired his speech, mobility, and independence. In the home where Mr. Thomas' father now lives, he receives only half the dose, and his condition has improved significantly. Mrs. Ullmann and Mr. Thoma conclude that "the dosages are set too high everywhere.
What helps? - Caregivers' perspective
Mrs. Zeller is 61 years old at the time of the interview. She is married and has children. She lives with her family in the German-speaking region of Switzerland. Mrs. Zeller works in the health care sector. She has been caring for her mother, who suffers from dementia, for about seven years. She is 87 years old and has been living in a nursing home for five years. Before that, her mother lived alone in a flat. Her mother was 75 years old when a dementia test was done. Mrs. Zeller is the oldest of three siblings and the main caregiver for her mother. Mrs. Zeller has been familiar with illness and care in the family since childhood, as her grandparents and an aunt also suffered from dementia. For her mother, who was a farmer, activity and mobility are very important.
Frau Zeller
After her mother was sedated in the nursing home, which was damaging, Mrs. Zeller felt clear that no treatment should occur without her consent as the daughter.
After her mother was sedated in the nursing home, which was damaging because it decreased her mother’s quality of life and longevity, Mrs. Zeller felt clear that no treatment should occur without her consent as the daughter.
Therapeutic approaches
Dementia
Frau Zeller
Early on, Mrs. Zeller and her mother talked about not being cared for at home because it would be too much for Mrs. Zeller.
Early on, Mrs. Zeller and her mother talked about not being cared for at home because it would be too much for Mrs. Zeller.
Processes of adaptation
Dementia
Frau Zeller
Mrs. Zeller attended a course in Validation to learn ways to deal with her mother, who suffers from dementia.
Mrs. Zeller attended a course in Validation to learn ways to deal with her mother, who suffers from dementia. The method, essentially, it to focus on responding to what the person says rather than contradicting them.
Four levels of communication of the caregivers
Dementia
Frau Zeller
Mrs. Zeller looks at her mother's non-verbal signs (facial expressions) and emotions to determine how her mother is feeling.
Mrs. Zeller looks at her mother's non-verbal signs (facial expressions) and emotions to determine how her mother is feeling. She also relies on intuition.
Four levels of communication of the caregivers
Dementia
Frau Zeller
Mrs. Zeller recommends actively acquiring knowledge about how best to deal with dementia patients and to exchange ideas with other relatives.
Mrs. Zeller recommends actively acquiring knowledge in dealing with dementia patients and exchanging ideas with other relatives.
What helps? - Caregivers' perspective
Dementia
Frau Zeller
Treating her mother with respect means still perceiving in her the person she used to be, says Mrs. Zeller.
According to Mrs. Zeller, treating her mother with respect means still perceiving in her the person she used to be. Even with advanced dementia, she recognizes characteristics of her mother.
Processes of adaptation
Dementia
Frau Zeller
Mrs. Zeller worries about prevention, but remains without an answer.
Mrs. Zeller worries about prevention and what she could do to prevent dementia in herself. However, she remains without an answer.
What is dementia?
Dementia
Frau Zeller
Dementia appears to Mrs. Zeller as an escape from an accelerated, overly-complex world.
Dementia appears to Mrs. Zeller as an escape from an accelerated, overly-complex world.
What is dementia?
Dementia
Frau Zeller
Mrs. Zeller has decided not to put a GPS on her mother.
Mrs. Zeller has decided not to put a GPS on her mother. She had to balance her mother's freedom of movement with her responsibilities as a caregiver. Her mother's preference to be physically active was ultimately the deciding factor.
Processes of adaptation
Dementia
Frau Zeller
Having to decide for the other person has a high potential for frustration, notes Mrs. Zeller.
Having to make decisions for the other person has a high potential for frustration, Mrs. Zeller notes. She has to guard her mother so that nothing happens to her, or she does not make mistakes such as losing money. Mrs. Zeller is reluctant and finds it difficult to dispose of her mother. However, this conflict has eased over time.
Processes of adaptation
Dementia
Frau Zeller
Her siblings accept the role of Mrs. Zeller as the one mainly responsible for their mother.
Her siblings accept the role of Mrs. Zeller as the one mainly responsible for their mother. The siblings communicate with each other in a group chat to all stay informed.
Four levels of communication of the caregivers
Dementia
Frau Zeller
Should Mrs. Zeller develop dementia and need care, she will move into a nursing home.
Mrs. Zeller, who cares for her mother, who suffers from dementia, takes the decision away from her own children. Should she develop dementia and need care, she will move into a nursing home. The only thing that matters to her is that her children ensure that she is well cared for in the nursing home.
Advance care planning
Dementia
Frau Zeller
Mrs. Zeller filled out an advance directive with her mother when she moved to the nursing home.
Mrs. Zeller filled out a living will with her mother when she transitioned to the nursing home. Mrs. Zeller had always been her mother's primary contact person in the family, which is why she became her proxy.
Advance care planning
Dementia
Frau Zeller
High quality treatment requires that physicians and nurses would not be the only ones to decide on the medications used and a medical treatment, Mrs. Zeller says.
Mrs. Zeller thinks it is important for relatives to participate in medical decision-making. She feels that high quality treatment requires doctors and nurses to take input rather than decide on their own what medications and medical treatment would be best.
What helps? - Caregivers' perspective
Dementia
Frau Zeller
Mrs. Zeller had to intervene repeatedly at the nursing home to ensure that her mother received pureed food.
Mrs. Zeller had to intervene repeatedly in the nursing home to ensure that her mother received pureed food, which is necessary since her mother can no longer chew well. Mrs. Zeller wants to encourage relatives to actively advocate for their loved ones who are vulnerable when institutionalized.
Four levels of communication of the caregivers
Dementia
Frau Zeller
In order to roughly assess the quality of care, Mrs. Zeller put nursing and hotel costs of the homes in perspective.
When transferring her mother to a dementia-friendly nursing home, Mrs. Zeller searched and waited for a long time. In order to be able to roughly estimate the quality of care, she put the nursing and hotel costs of the homes into a ratio.
At home or in a nursing home?
Dementia
Frau Zeller
For Mrs. Zeller, a dementia-friendly nursing home means specialized care, sufficient nursing staff and accessible outdoor facilities.
For Mrs. Zeller, a dementia-friendly nursing home means specialized care, sufficient nursing staff and accessible outdoor facilities.
What helps? - Caregivers' perspective
Dementia
Frau Zeller
It is difficult to experience her mother's change from an independent woman to a helpless person, says Mrs. Zeller.
It is emotionally difficult for Mrs. Zeller to observe the change in her mother from an independent woman who managed life well to a helpless person.
Processes of adaptation
Dementia
Frau Zeller
The fact that Mrs. Zeller's mother enrolled herself in a nursing home to relieve the burden on her children was a great help to Mrs. Zeller and her siblings.
The fact that Mrs. Zeller's mother enrolled herself in a nursing home to relieve the burden on her children was a great help to Mrs. Zeller and her siblings. Mrs. Zeller suggested to her mother at an early age to deal with the possible case of needing care in order to be able to make decisions.
At home or in a nursing home?
Dementia
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