Frau Dubois
Dementia
Age 78
Mrs. Dubois lives in the western region of Switzerland. She is 78 years old at the time of the interview. Her husband, 77, who lives in a nursing home, was diagnosed with Alzheimer's disease and vascular dementia four years ago. Her husband's aggressiveness and incontinence made home care impossible. Before deciding to transfer to a nursing home, Mrs. Dubois increased the amount of time her husband spent at a day program, which he had attended once a week, to ease the burden. In between, he spent several weeks in a home, where he behaved just as aggressively. Mrs. Dubois receives support from her sisters and from the nursing staff in the home. With the dementia, her marital happiness collapsed. Mrs. Dubois had worked as a doctor, running a joint practice with her husband. The imminent sale of their house feels like a great loss.
experiences
Frau Dubois
Mrs. Dubois believes that it is important to have multiple opportunities to receive information and ask questions; when one is directly affected or involved, it can be hard to absorb information.
Mrs. Dubois believes that it is important to have multiple opportunities to receive information and ask questions; when one is directly affected or involved, it can be hard to absorb information. She thinks it would be nice to have a chance to consult with the family doctor and a disease expert together.
What helps? - Caregivers' perspective
Frau Dubois
Mrs. Dubois recounts an episode when she left her husband, who was behaving aggressively, to his own devices one day due to exhaustion. The situation could have put him in mortal danger, and reflecting on it causes Mrs. Dubois strong feelings of guilt.
Mrs. Dubois recounts an episode when she left her husband, who was behaving aggressively, to his own devices one day due to exhaustion. The situation could have put him in mortal danger, and reflecting on it causes Mrs. Dubois strong feelings of guilt.
Processes of adaptation
Frau Dubois
Mrs. Dubois has a very good connection with the nursing specialist. This influenced her decision not to move her husband to another home closer to her house.
Because Mrs. Dubois has a very good connection with the nurse, when her husband needed more care days, she decided to keep him in the same nursing home despite the fact that it was farther from her house than other options that would have been more convenient. She found the nurse comforting and understanding. Her connection with the nurse helped soften feelings of guilt that she could not live up to her ideal to care for her husband at home.
What helps? - Caregivers' perspective
Frau Dubois
Mrs. Dubois has an idea to get the relatives who visit the nursing home involved in engaging the dementia patient there.
Mrs. Dubois thinks about possible ways to get the residents of the nursing home more active and, based on a previous experience, she came up with the idea of involving the relatives who come to visit. Having people commit as volunteers one afternoon per month seems reasonable. She thinks communal volunteer work is a good way to keep the costs down.
What helps? - Caregivers' perspective
Frau Dubois
Mrs. Dubois says that her husband's son has not had any contact with him. She conjectures that this might be because the son is afraid of having dementia himself one day.
Mrs. Dubois says that her husband's son has not had any contact with him. She conjectures that this might be because the son is afraid of one day having dementia himself and prefers not to face the situation since he would then consider the implications for himself.
Four levels of communication of the caregivers
Other experiences
Herr Bordoni
Mr. Bordoni is 73 years old at the time of the interview and lives in a remote region in Italian-speaking Switzerland with his wife of 10 years, Mrs. Bordoni, who was also interviewed. Mr. Bordoni was diagnosed with Alzheimer's dementia when he was 70 years old. He describes the fact that the diagnosis came after his retirement as a stroke of luck. He said he was spared dismissal due to the impairments caused by the disease. Mr Bordoni worked as a precision mechanic. Mr Bordoni is supported by his wife and regularly receives psychological counselling.
Frau Bordoni
Mrs. Bordoni is the wife of Mr Bordoni. Mrs. Bordoni is 62 years old at the time of the interview. She comes from central Switzerland. She supports her husband, who has Alzheimer's dementia. Mrs.. Bordoni is employed part-time. Mrs.. Bordoni considers it very important to get information and counselling about the disease.
Herr Esposito
Mr. Esposito is 79 years old at the time of the interview. He was diagnosed with Alzheimer's dementia a few years earlier. He lives in Italian-speaking Switzerland and is cared for at home by a caregiver who is with him around the clock. His caregiver is present during the interview. Mr. Esposito is divorced. He has two children who support him. The disease puts a lot of stress on Mr. Esposito, which is why he has considered ending his life.
Herr de Luca
Mr. de Luca is 66 years old at the time of the interview and lives at home with his wife in Italian-speaking Switzerland. The interview takes place with Mr. de Luca and his wife accompanies him during the interview. Mr. de Luca has been diagnosed with Alzheimer's dementia. He can still do many things, although fatigue affects his daily life. Mr. de Luca has worked in the health care sector: he worked as a nurse for many years in psychiatry, where he himself cared for people suffering from dementia. Mr. de Luca has grown-up children. His older son also works as a psychiatric nurse.
Frau Reinhart
Mrs. Reinhart is 82 years old at the time of the interview and lives at home with her partner, who is 83 years old, in Northwestern Switzerland. She has two sons. When she was 77 years old, she was diagnosed with dementia. During the interview, her son, Mr. Reinhart, and his life partner are present. Mr. Reinhart visits his mother every day, and his brother, who lives farther away, helps out on the weekends. The outpatient care service comes by every day. In this arrangement, it is possible for Mrs. Reinhart to live at home.
Herr Reinhart
Mr. Reinhart is 59 years old at the time of the interview. He is Mrs. Reinhart's son and is mainly responsible for the care of his mother who suffers from dementia. Mr. Reinhart lives with his partner in northwestern Switzerland. He works part-time. Mr. Reinhart has no children. Mr. Reinhart's partner has specific knowledge about mental impairments due to her job. During the interview with Mr. Reinhart, his partner and his mother are also present. Mr. Reinhart and his partner are in deep discussions around the option of bringing Ms. Reinhart into their household if the current living arrangement with his mother's partner no longer works.
Herr Eberle und Frau Mathis
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.
Frau Ullmann und Herr Thoma
The interview was held with both Mr. Thoma, whose father was diagnosed with dementia four years ago, and Mrs. Ullmann, who is a close friend of Mr. Thoma’s father. Both Mr. Thoma and Mrs. Ullmann live in the same area in the northern part of Switzerland. Mr. Thoma is 25 years old, and Mrs. Ullmann is 56 years old. Today, Mr. Thoma’s father is 55 years old. Until two years ago, Mr. Thoma’s father lived alone at home; today he lives in a nursing home. Mrs. Ullmann helps with care by communicating with the care institutions and advocating for Mr. Thoma's father's interests. Mr. Thoma focuses on the new relationship he has been able to build with his father because of his father's dementia. Mr. Thoma feels he is forevermore his father’s confidant and support. Both Mr. Thoma and Mrs. Ullmann live in the same place in the northern part of Switzerland.
Frau Tailler
Mrs. Tailler lives in the western region of Switzerland. She is 70 years old. Her husband, who is 81, was diagnosed with Alzheimer's dementia six years ago. Both Mrs. Tailler and her husband were previously married. Mrs. Tailler has three children from her first marriage, and her husband has four children. Mrs. Tailler worked as a nurse practitioner. The Alzheimer's diagnosis turned Mrs. Tailler's life upside down. Caregiving has made her housebound; she sees her hopes of enjoying life as a retiree with her husband thwarted. She is no longer able to do for her own family what she wishes she could; she lacks the time to look after her grandchildren or to go out for social engagements. The fact that it is not possible to talk to her husband about his illness limits Mrs. Tailler's hope for relief. Mrs. Tailler is supported by her husband's daughters, who arranged for him to be enrolled in a day program, which he has recently begun attending two times a week. He is on the waiting list for short stays in several homes.
Frau Attinger
Mrs. Attinger is 50 years old at the time of the interview. She is married and lives in the German-speaking region of Switzerland. Her 79-year-old mother was diagnosed with Alzheimer's dementia two years ago. Her mother lives with her husband, who is 12 years younger than her, in the same neighborhood as Mrs. Attinger. Mrs. Attinger has a sister and a brother. Together with her sister, she takes care of her mother on a daily basis, helping with household chores, preparing medications, and accompanying her to appointments. Mrs. Attinger is employed full time.
Frau Martin-Perret
Mrs. Martin-Perret, 78 at the time of the interview, is married and lives in western Switzerland with her husband, who is 95. The couple has one son. Her husband, who is physically healthy, was diagnosed with Alzheimer's dementia two years ago. Mrs. Martin-Perret is coping with the caregiving situation; she feels sufficiently able to deal with her husband and attributes this confidence to her professional expertise and generally caring attitude. Mrs. Martin-Perret worked as a nurse practitioner in pediatrics. The fact that the couple gets along well also contributes to the successful caregiving relationship as do the quiet nights. Mrs. Martin-Perret is supported by a caregiver for two hours a week. Her son also helps, caring for his father in between moments. However, Mrs. Martin-Perret does not feel that she receives any support from other family members and friends.
Frau Bodmer
Ms. Bodmer is 28 years old at the time of the interview, has two siblings, and lives in the northern part of Switzerland. Ms. Bodmer is currently working in education. Her 88-year-old grandmother, who is physically healthy, developed dementia six years ago. Her grandmother does not have a specific dementia diagnosis. Ms. Bodmer's grandmother lives alone at home in a small village. Ms. Bodmer's father, who lives in the immediate vicinity, cares for his mother daily. There is a wider support network of family members, friends, and neighbors who are in daily contact with Ms. Bodmer’s grandmother as well. The grandchildren help around the house, and Ms. Bodmer visits her grandmother on weekends to do things with her. Outside help from the outpatient nursing service has been considered by the family, but Ms. Bodmer’s grandmother is emotionally sensitive to the suggestion of bringing in external support.
Frau Zeller
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.
Herr Wolfensberger
Mr. Wolfensberger is 74 years old at the time of the interview; his wife is 81. The couple lives in the southwestern part of Switzerland. Mrs. Wolfensberger was diagnosed with Alzheimer's dementia 11 years ago. Seven years ago, she suffered a stroke. Although she partially recovered, her vision, motor skills, and spatial orientation have been severely limited ever since. Mrs. Wolfensberger requires 24-hour nursing care, which places a heavy burden on Mr. Wolfensberger. For the past four years, his wife has been cared for in the mornings by Spitex. The respite service comes three times a week, and she attends a day structure once a week. This care arrangement allows Mr. Wolfensberger to pursue his work. The couple were employed in academia. Mr. Wolfensberger has dementia-specific expertise.
Frau Hofer
Mrs. Hofer, 70 years old at the time of the interview, talks retrospectively about her experience as a family caregiver. The interview took place five years after the death of her husband, who suffered from mixed dementia (Alzheimer's, vascular dementia, frontotemporal dementia) and died at the age of 65. While caring for her husband, she was also employed fulltime. Mrs. Hofer has no children. She lives in the German-speaking region of Switzerland. The couple met shortly before her husband developed dementia. They married and her husband moved from Germany to live with Mrs. Hofer in Switzerland. The first symptoms appeared seven years before the diagnosis, when her husband was 60 years old. The intensive care period started one year after the diagnosis when her husband could no longer be alone during the day and Mrs. Hofer had to change the care arrangement several times because her husband left the day homes and behaved aggressively. Until his death, he was cared for partly at home and partly in a nursing home. The fact that Mrs. Hofer's employer showed understanding for the care situation and that she was able to change her working hours and location were very helpful.
Frau Hürsch-Dietrich, Herr Hürsch und Frau Colombo-Hürsch
Mrs. Hürsch-Dietrich is 81 years old at the time of the interview and lives in the northwestern part of Switzerland. Her husband, seven years older than she is, recently moved into a nursing home. He was diagnosed with dementia ten years ago, however, Mrs. Hürsch believes that the first signs of the disease appeared ten years before the diagnosis. Mrs. Hürsch cares for her husband with the help of their four children. Two of the children, Mr. Hürsch (age 51) and Mrs. Colombo-Hürsch (age 52), participated in the interview. Despite having constant care, a period of increased aggressivity a few years ago added additional stress on Mrs. Hürsch. Sending her husband to the day program two to three times a week as well as taking a vacation bed for a few days was essential to provide more complete breaks from care. Transferring her husband to a nursing home was an emotionally difficult step for Mrs. Hürsch.
Frau Lefebre
Mrs. Lefebre is 67 years old at the time of the interview. She is single, has no children, and lives in the southern part of Switzerland. She has worked in the education sector. Mrs. Lefebre was diagnosed with Alzheimer's dementia when she was 65 years old. She lives at home, supported by her family members as well as by Mrs. Richaud and the outpatient care service. Mrs. Lefebre has also been attending a structured day program twice a week for a few months, and she experiences the community there as supportive. Her friends, with whom she is surrounded, are very important to her. She is looking for a good way of living with dementia.
Frau Engel
Mrs. Engel, 71 years old at the time of the interview, is married and lives with her husband, who is 84 years old, in the northwestern part of Switzerland. At the time of the interview, Mrs. Engel is in the process of selling their house in order to move with her husband, who suffers from dementia to an accessible apartment within the locality where they live. Mrs. Engel is currently caring for her husband herself. Her daughter, who is her father's guardian and lives nearby, helps. Mrs. Engel has no plans for further assistance, as she is managing to handle the situation. Her husband's health is good, she says, and it is not stressful for care for him. Her generally positive disposition and the information she has received about the disease help her to deal with her husband. Mrs. Engel is experienced with the disease; her mother, whom she cared for part of the time, also had dementia. However, Mrs. Engel perceives differences between the course of the disease in her husband and its progression in her mother. Mrs. Engel was employed.
Frau Richaud
Mrs. Richaud, like her friend Mrs. Lefebre, is 67 years old at the time of the interview. Mrs. Richaud is married and lives in the southern part of Switzerland. Mrs. Richaud is involved in the care of her grandchildren. In addition, she supports her friend, Mrs. Lefebre. She is there for her every day, accompanies her to appointments, and organizes the care arrangement. She has also taken over guardianship for Mrs. Lefebre together with her husband. Helping this other person is important to Mrs. Richaud. At the same time, she sees dementia care as a job that is demanding. She considers remuneration to be appropriate.
Herr Ott
Mr. Ott, 54 years old at the time of the interview, cared for his mother, who suffered from dementia, for six years. She passed away the year before the interview. His mother was diagnosed with Alzheimer's dementia. Mr. Ott lives and works in the northeastern part of Switzerland; his mother lived in central Switzerland. Thanks to the fact that he is self-employed, Mr. Ott was able to arrange his schedule flexibly during the week and to interrupt his work at short notice when his mother needed help. On weekends, he was regularly with her to manage household chores and keep her company. After a fall at home, his mother was transferred to a nursing home, where she died a few months later. Mr. Ott has a brother who also lives in central Switzerland and took over administrative matters for his mother. Mr. Ott did not experience his mother's dementia as a major disruption in their relationship to one another, as he had always played the role of his mother's close caregiver and had cared for her since his father's death 20 years ago. In addition to the support, she received from her sons, Mr. Ott’s mother got help from the outpatient nursing and visiting service as well as from those in the neighborhood.
Frau Morel
At the time of the interview, Mrs. Morel is 71 years old and lives in French-speaking Switzerland with her daughter and her daughter's two children. Mrs. Morel is widowed. Five years ago, when she was 66 years old, she was diagnosed with Alzheimer's dementia. In addition to daily care from one of her daughters, she attends a structured day program. The fact that she is not alone but in the community with her daughter and grandchildren is a great comfort. She describes herself as a person with the will to persevere, and her faith helps.
Herr Cohen
At the time of the interview, Mr Cohen is 62 years old and lives at home with his wife in French-speaking Switzerland. When he was 57 years old, he was diagnosed with Alzheimer's dementia. The diagnosis led to the end of his working life as a service technician. His wife as well as his daughter are there for him. He still lives largely independently. The psychiatric Spitex (outpatient care service) accompanies him weekly. In addition, he takes part in a monthly patient self-help group. Through occupational therapy, he has discovered a creative side.
Herr Vuillemin
Mr Vuillemin is 70 years old at the time of the interview. He lives at home with his wife, to whom he has been married for 45 years. He has two children. The family lives in French-speaking Switzerland. When Mr Vuillemin was in his mid-50s, he suffered an ischaemic stroke, which left him unable to work. Over time, he began to forget things. At 65, he was diagnosed with mixed Alzheimer's and vascular dementia. He does not need external care assistance at the moment, nor does he attend any day programs. His wife is there for him. To this day, he still walks a lot in the mountains. However, he had to give up his club activities. He is still independent but needs the daily help of his wife because of his memory lapses and orientation difficulties.
Frau Weber
Mrs. Weber is 58 years old at the time of the interview. She lives with her family, her husband, and two children, in Northwestern Switzerland. She works part-time. The interview took place one year after the death of Mrs. Weber's mother, who began to show signs of dementia at the age of 65. She did not have a specific dementia diagnosis. Her mother initially lived in a flat in an urban setting for six years before transferring to a nursing home, where she died at 77. Mrs. Weber's father, who is significantly older than her mother, also developed dementia. He lives with his younger partner, who cares for him along with Mrs. Weber's support. Mrs. Weber has no siblings.
Frau Köhler-Münch
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.
Herr Jenny und Herr Jenny
The interview with the Jenny brothers takes place together. Mr Jenny, 66 years old, was diagnosed with Alzheimer's dementia shortly before his retirement. He worked in the food industry. He lives in eastern Switzerland, is single, and has no children. He is independent and lives at home with the support of the outpatient care service, which comes by daily. Once a week, Mr Jenny attends a day structure. His brother, who is two years younger and lives in another region, is his confidant. He tries to promote social contacts and activities for his ill brother and to structure the week. On weekends, the siblings occasionally do something together. As a caregiver, Mr Jenny experiences understanding and support from his wife. He can also draw on her expertise as she works in the health sector.
Herr Sonderegger
Mr Sonderegger is 83 at the time of the interview and his wife is 80. The couple has children and lives in the German-speaking region of Switzerland. Mr Sonderegger's wife was diagnosed with Alzheimer's dementia when she was about 76 years old. However, he suspects that the dementia started some years earlier. Mr Sonderegger is supported by his son in caregiving. Mrs. Sonderegger was initially cared for in a nursing home. After the aggression subsided, Mr Sonderegger decided to care for his wife at home again to improve her quality of life. During the week, he is supported by privately engaged caregivers. The fact that the couple lives in a house with a garden helps a lot. Mr Sonderegger is confronted with other illnesses in the family. His brother is also suffering from dementia. He has taken over the guardianship for his sister-in-law, who is in need of care.
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