Mrs. Köhler-Münch is 47 years old at the time of the interview. She lives in the north-eastern part of Switzerland. Mrs. Köhler-Münch lives in a partnership. She is employed full-time and has no children. Mrs. Köhler's mother, who was diagnosed with Alzheimer's dementia 13 years ago, lives in a nursing home in Germany. Mrs. Köhler's parents lived together, but when her father died of cancer, the home care arrangement broke down. Her mother transferred to a nursing home. There were several changes of nursing home because the quality of care was not right, Mrs. Köhler's mother left the home, or behaved aggressively. Mrs. Köhler has two siblings, a brother and a sister, who live in Germany and are both involved in their mother's care. Her brother is the primary guardian and main person in charge. Mrs.. Köhler herself travels to Germany to visit her mother every weekend. The family is affected by dementia in multiple cases; her aunt and uncle also suffer from dementia. At the time of the interview, Mrs. Köhler was planning to move to the USA.
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Mrs. Köhler-Münch relates that sometimes she acts taking cues from the delusion or confusion of her mother, who suffers from dementia. Mrs. Köhler-Münch invents stories to which her mother reacts positively, which is why the communication strategy seems effective, even if the "fibbing" is somewhat alienating.
TRANSCRIPT
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
Herr Sonderegger
After the diagnosis, Mr. Sonderegger changed how he communicated with his wife.
After the diagnosis, Mr. Sonderegger changed how he communicated with his wife. He no longer contradicts her but instead remains patient. Arguments had previously been common.
Four levels of communication of the caregivers
Mrs. Köhler-Münch is 47 years old at the time of the interview. She lives in the north-eastern part of Switzerland. Mrs. Köhler-Münch lives in a partnership. She is employed full-time and has no children. Mrs. Köhler's mother, who was diagnosed with Alzheimer's dementia 13 years ago, lives in a nursing home in Germany. Mrs. Köhler's parents lived together, but when her father died of cancer, the home care arrangement broke down. Her mother transferred to a nursing home. There were several changes of nursing home because the quality of care was not right, Mrs. Köhler's mother left the home, or behaved aggressively. Mrs. Köhler has two siblings, a brother and a sister, who live in Germany and are both involved in their mother's care. Her brother is the primary guardian and main person in charge. Mrs.. Köhler herself travels to Germany to visit her mother every weekend. The family is affected by dementia in multiple cases; her aunt and uncle also suffer from dementia. At the time of the interview, Mrs. Köhler was planning to move to the USA.
Frau Köhler-Münch
Mrs. Köhler-Münch made a conscious decision to reduce the number of visits to see her mother in the nursing home.
Mrs. Köhler-Münch made a conscious decision to reduce the number of visits to see her mother in the nursing home because they were stressful.
Processes of adaptation
Dementia
Frau Köhler-Münch
Mrs. Köhler-Münch says that she sometimes makes up stories when talking to her mother.
Mrs. Köhler-Münch relates that sometimes she acts taking cues from the delusion or confusion of her mother, who suffers from dementia. Mrs. Köhler-Münch invents stories to which her mother reacts positively, which is why the communication strategy seems effective, even if the "fibbing" is somewhat alienating.
Four levels of communication of the caregivers
Dementia
Frau Köhler-Münch
Mrs. Köhler-Münch and her siblings have urged their mother to clarify the situation.
The first signs in her mother appeared several years before the diagnosis, says Mrs. Köhler-Münch. She and her siblings had urged her to have tests. The diagnosis was emotionally very difficult for her mother. She had suspected what was in store for her, since her brother also had Alzheimer's disease.
Diagnosis
Dementia
Frau Köhler-Münch
Mrs. Köhler-Münch received tips from nursing professionals in the home on how to deal with her mother, who suffered from dementia. The professionals from the home helped her better understand the disease.
Mrs. Köhler-Münch received tips from nursing professionals in the home on how to deal her mother’s restlessness and aggressive behavior. The professionals from the home helped her better understand the disease.
What helps? - Caregivers' perspective
Dementia
Frau Köhler-Münch
Mrs. Köhler-Münch is afraid of developing Alzheimer's dementia like her relatives.
In her mother's family, four people have Alzheimer's dementia, says Mrs. Köhler-Münch. That's why she's afraid of getting the same disease. She considered early diagnosis, but then decided against it. It is better not to know.
What is dementia?
Dementia
Frau Köhler-Münch
Mrs. Köhler-Münch does not attribute any effectiveness to the medications her mother takes or to the doctor's recommendations such as memory training, exercise, or sufficient fluid intake.
After the diagnosis, her mother tried several medications in different dosages until her condition stabilized. However, Mrs. Köhler-Münch attributes no effectiveness to either the medications or the doctor's recommendations to do memory training, get enough exercise, and drink enough fluids since her mother practiced these throughout her life.
What is dementia?
Dementia
Frau Köhler-Münch
Mrs. Köhler-Münch wants to make an advance directive for herself.
Ms. Köhler-Münch wants to make an advance directive for herself, but "better and more detailed" than is the case with her mother. Nevertheless, it is difficult to specify what "life-prolonging" means. An advance directive does not guarantee clear answers (e.g. regarding medication), she concludes.
Advance care planning
Dementia
Frau Köhler-Münch
Mrs. Köhler-Münch is considering Exit (euthanasia organisation in Switzerland) for herself.
Ms. Köhler-Münch is considering Exit (euthanasia organization in Switzerland) for herself. The controversial question is the point in time. This poses the same problem as with the living will. There is no compass, no guideline.
Advance care planning
Dementia
Frau Köhler-Münch
After the management of the nursing home changed, communication broke down, says Mrs. Köhler-Münch.
After the nursing home management changed, communication broke down, says Mrs. Köhler-Münch. She and her siblings were no longer given access to the medication list of their mother.
Four levels of communication of the caregivers
Dementia
Frau Köhler-Münch
Mrs. Köhler-Münch can no longer watch films about dementia.
Mrs. Köhler-Münch is very concerned about her mother's dementia. She says she can no longer watch films about dementia.
Processes of adaptation
Dementia
Frau Köhler-Münch
With the little phrase "You do what you can," Mrs. Köhler-Münch succeeded in bringing her active role back into focus.
With the little phrase "You do what you can," Mrs. Köhler-Münch managed to bring her ability to act and active role back into focus. This helps her to counteract the feeling of helplessness in the face of the disease.
Processes of adaptation
Dementia
Frau Köhler-Münch
A change of nursing home could not be organized quickly, says Mrs. Köhler-Münch.
Due to poor quality of care, Mrs. Köhler-Münch and her siblings decided to move their mother, who suffers from dementia, to another nursing home. However, the change could not be organized quickly, she concludes.
At home or in a nursing home?
Dementia
Frau Köhler-Münch
Her mother's appearance was greatly altered by taking antipsychotics, says Mrs. Köhler-Münch.
It was shocking to Mrs. Köhler-Münch how her mother's appearance changed as a result of taking antipsychotics (she receives antidepressants and medication for Parkinson's disease, among other things). Her face became "really angular," she says.
Therapeutic approaches
Dementia
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