Mr. Eberle is 82 years old at the time of the interview, his partner, Mrs. Mathis, is 80 years old. Mrs. Mathis is present during the interview and contributes. The couple lives in central Switzerland. Mrs. Mathis was diagnosed with Alzheimer's dementia when she was 74 years old. After the diagnosis, the couple decided to move into a retirement flat attached to a nursing home. Mrs. Mathis is involved in an occupational program there. Mrs. Mathis has three children, a son and two daughters. The two daughters help with the care, especially the eldest daughter, who works in social services. This daughter is an important contact person for Mr. Eberle. Mr. Eberle attends the relative’s group, which he finds very supportive.
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Mr. Eberle cannot fathom why he, as a relative who is experienced in dealing with his partner with dementia, is rebuked in the psychiatric ward because of the hours when he tries to visit.
TRANSCRIPT
Frau Hofer
Not all the nurses handle difficult patients equally as well, which is why support from relatives is needed, concludes Mrs. Hofer.
Not all the nurses handle difficult patients equally as well, concludes Mrs. Hofer. It took Mrs. Hofer's support to prevent escalations between her husband and the Spitex employee providing him with dementia care.
Four levels of communication of the caregivers
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
Mr. Eberle is 82 years old at the time of the interview, his partner, Mrs. Mathis, is 80 years old. Mrs. Mathis is present during the interview and contributes. The couple lives in central Switzerland. Mrs. Mathis was diagnosed with Alzheimer's dementia when she was 74 years old. After the diagnosis, the couple decided to move into a retirement flat attached to a nursing home. Mrs. Mathis is involved in an occupational program there. Mrs. Mathis has three children, a son and two daughters. The two daughters help with the care, especially the eldest daughter, who works in social services. This daughter is an important contact person for Mr. Eberle. Mr. Eberle attends the relative’s group, which he finds very supportive.
Herr Eberle und Frau Mathis
To escape the daily routine of caregiving and take breaks, Mr. Eberle travels to Ticino.
To escape the daily care routine and take breaks, Mr. Eberle travels to Ticino alone or with his partner who suffers from dementia.
Processes of adaptation
Dementia
Herr Eberle und Frau Mathis
Mr. Eberle attends a support group for relatives; this social exchange is greatly appreciated.
Mr. Eberle very much appreciates both the social anonymity and the genuine exchange in the relatives' support group. This context enables him to communicate more openly and with less pretense than in his circle of acquaintances.
What helps? - Caregivers' perspective
Dementia
Herr Eberle und Frau Mathis
Mr. Eberle mentions that his partner does not blame him if she loses or misplaces something. For him, this is the basis of living together.
Mr. Eberle mentions that his partner does not blame him if she loses or misplaces something. For him, this is the basis of living together. It would not work otherwise.
Processes of adaptation
Dementia
Herr Eberle und Frau Mathis
The neighbors are informed about Mrs. Mathis' dementia. They are attentive, which helps a lot, says Mr. Eberle.
Both Mr. Eberle and Mrs. Mathis appreciate the goodwill of their neighbors. Since the neighbors are informed about Mrs. Mathis' dementia, they are attentive. That helps a lot, says Mr. Eberle.
Four levels of communication of the caregivers
Dementia
Herr Eberle und Frau Mathis
Mr. Eberle and his partner, who suffers from dementia, have been receiving psychiatric support for several years. According to Mr. Eberle, this is helpful for the couple's relationship.
Mr. Eberle and his partner with dementia have been receiving psychiatric support for several years. This is helpful for the couple relationship in order to avoid hurting one another.
Processes of adaptation
Dementia
Herr Eberle und Frau Mathis
Safety precautions are needed, Mr. Eberle concludes.
Safety precautions are needed, Mr. Eberle concludes. Relatives cannot just allow anything to happen, even if they feel morally unsure about restricting their loved one’s autonomy. Mr. Eberle illustrates this with an example of the downside of not intervening that was presented by someone in his self-help group.
Processes of adaptation
Dementia
Herr Eberle und Frau Mathis
No one sees the work related to dementia care, says Mr. Eberle.
Because the limitations associated with dementia are not visible at first glance ("you don't notice anything"), no one sees the work involved in dementia care. Mr. Eberle could not openly communicate his situation as a relative. At the beginning, he also misjudged the severity of the disease, says Mr. Eberle.
What is dementia?
Dementia
Herr Eberle und Frau Mathis
Mrs Mathis' self-image is assaulted.
Mrs. Mathis' self-image is under attack. At work, she would have had a lot of responsibility and received recognition. That time is over, she says.
Impairments, restrictions and impacts
Dementia
Herr Eberle und Frau Mathis
After Mrs. Mathis was diagnosed with Alzheimer's, Mr. Eberle moved into a retirement flat with her.
Mr. Eberle says that he "hit the skids" after his partner was diagnosed with Alzheimer's disease. It became clear to him that they would have to reorganize their lives. He registered himself and his partner for a retirement apartment, a decision he would not have regretted.
Diagnosis
Dementia
Herr Eberle und Frau Mathis
His partner's dysfunctions are a test of patience for Mr. Eberle.
His partner's dysfunctions are a test of patience for Mr. Eberle. He has learned not to lose his patience or get angry anymore.
Processes of adaptation
Dementia
Herr Eberle und Frau Mathis
Mr. Eberle cannot fathom why he, as a relative, is rebuked in the psychiatric ward because of the hours when he tries to visit.
Mr. Eberle cannot fathom why he, as a relative who is experienced in dealing with his partner with dementia, is rebuked in the psychiatric ward because of the hours when he tries to visit.
Four levels of communication of the caregivers
Dementia
Herr Eberle und Frau Mathis
Mr. Eberle will base the timing of when to transfer his partner to a home on when she becomes mentally absent.
Mr. Eberle bases the timing of the transfer to the home on the mental absence of his partner. For the time being, however, the couple can rely on his partner's daughters.
At home or in a nursing home?
Dementia
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