CASE VIGNETTES | All Questions
CASE VIGNETTES | All Questions
As part of the STRiDE project, we developed five case vignettes to explore access to diagnosis, care and support for people living with dementia and their families. These case vignettes provide useful insights into how people living with dementia and their family carers can access diagnosis, care and support, and can navigate the systems in place; they also highlight what barriers people are likely to encounter.
Each of the vignettes portrays different characteristics and living situations. A detailed overview of the approach taken can be found here. In addition to the five case vignettes (01-05) that the STRiDE teams across the seven countries applied to their country-specific context, the teams created additional case vignettes that represent scenarios particularly relevant to their context.
Below we outline, based on available evidence and expert advice, the likely access (or not) to diagnosis, care and support in each country for the illustrated cases.
Generic case vignette questions
Mrs A and her family, current experience
Mrs. A is in her 70s and lives with her husband in a small village in a rural area. Mrs A’s daughter and her family live nearby. Over the last year her family has become increasingly worried about Mrs. A, as she keeps losing things and puts items into odd places. A friend has told the daughter that Mrs. A had been wondering in the village and seemed a bit lost. The daughter is worried about what people may think or say about and how they may react to her mother. Mrs. A used to have a very neat house and looked after her appearance. She also helped her daughter with the children. Over the last few months Mrs. A seems to be no longer interested in these things. Mother and daughter used to have a good relationship, but recently there have been a number or arguments. The daughter is thinking of taking Mrs. A to the community health centre, but she knows that her mother does not like to go there.
Mrs B and her family, current experience
Mrs. B is in her 70s and lives in mid-size town. When her son got married, she moved in with her son and his wife. For the last few years, she helped the family by looking after the grandchildren and doing housework and cooking while her children were working in the business they own. About two years ago, Mrs. B’s family became worried about her behaviour and memory. Now Mrs. B mostly stays at home. She does not go out unless someone of the family accompanies her. Mrs. B also stopped cooking, which she always enjoyed. Her daughter-in-law reminds her to take medication she needs for other health issues and helps with dressing. Mrs. B does not like being left alone in the house. Mrs. B’s daughter-in-law is worried about her hygiene, but having to look after the business, taking over the cooking and shopping for the family as well as making sure that Mrs. B is safe and well during the day takes a lot of her energy and so she postpones thinking about this aspect. Once a week Mrs. B’s son takes his mother to [church].
Mrs C and her family, current experience
About five years ago Mrs. C started to become forgetful. Now, 75 years old, Mrs. C hardly ever leaves her room in her daughter’s house where she was moved when it became clear that she could no longer look after herself. The daughter and her granddaughter help her with dressing, eating, washing and going to the bathroom. The family has to make sure that food is not too chunky as Mrs. C has difficulty swallowing. It is difficult for the daughter’s family to go away together for the day as someone always needs to be around to look after her. The constant care needs in addition to her own family responsibilities also pose a strain on Mrs. C’s daughter has her own health issues. Mrs. C’s other children visit during holidays but find it difficult as she cannot always remember who they are.
Mr D and his family, current experience
Mr. D lives by himself in a mid-size town since his wife passed away last year. His children have moved to the bigger city to work and can only visit once a month. Over the last few months Mr. D has found it more difficult to look after the house and himself. His son noticed that his father does not seem himself and is worried about him and what people may think if they see his father.
Mr E and his family, current experience
Mr. E has left his family many years ago to work in a big city. While he visited his family once a year, his children have become increasingly estranged and he has lost contact with them after his wife passed away five years ago. He lives on his own in a small flat. Mr. E finds it difficult to find his way to the shops and back, has difficulty remembering appointments and often forgets about eating.
Country specific case vignette questions
Mr Fawaz and his family, current experience
Mr Fawaz is 68 years old and retired 8 years ago from his job as a central government employee. He lives with his wife in a city in North India. The couple live by themselves and are very socially active among their community. Mr Fawaz’s wife looks after him, as he is unable to remember basic things such as whether he has had his meals or taken a bath. He started forgetting and misplacing things almost 2 years ago, but for the past 1.5 years his wife has observed a number of changes in his daily activities. He is having difficulty speaking, swallowing his food, has forgotten the names of his closest friends, and he does not recognize his son or grandkids when they come to visit from the United States (US) for holidays. Mrs Fawaz, 63 years of age, is also a retired government bank employee. She has her own medical issues for which she visits a hospital that provides medical insurance coverage for retired government employees.
Mr Frank and his family, current experience
Mr Frank and his wife are returning residents from the United Kingdom living between the parishes of St. Elizabeth and St Andrew in Jamaica. They operate a few residential rental properties located in both parishes where they collect rent monthly. They share three adult sons living in the parish of St Andrew, where job opportunities were more available. Recently, Mr Frank began forgetting routine activities such as collecting rent, driving routes, the time of day and is displaying unpredictable behaviours. As such, one of his sons decided to move in with his father to keep an eye on him. One night, Mr Frank’s son heard the front door open at 3:00 am and saw his father heading out, informing his son that he was on his way to work. Out of concern for his father, his son recommended that he sees a health professional. Mr Frank, described as stubborn, refuses to go and became aggressive with his son when he threatened to take away the car keys.
Mr Gabriel and his family, current experience
Mr Gabriel is in his late 60s, is from a Black ethnic group, and lives with his son’s family at the top of an urban slum (‘favela’) in Rio de Janeiro. Mr Gabriel has diabetes, and is insulin dependent. He also has hypertension, arthritis, and chronic pain. Due to all these health issues, Mr Gabriel has increasingly avoided going down the favela hill as the streets are tortuous and have led Mr Gabriel to fall several times in the past. The high levels of violence also prevents Mr Gabriel from getting out and about as he has lost a son during a shooting. Mr Gabriel stays most days on his own as his son/daughter-in-law are working and his grandchildren are in school. Mr Gabriel feels as if he is a burden to his family, so he tries to avoid ‘complaining’ to them about his health needs. He has been feeling different recently, with mood swings, memory lapses, and dizziness. He is really scared about what could happen to him, which has made him feel really upset and lonely for several weeks already.
Mr Gautam and his family, current experience
Mr Gautam is 45 years old. He lives with his wife, two small children and his mother in a rented apartment in a major metropolitan city in India. Mr Gautam and his wife both work full time. Mr Gautam has been working as a financial services consultant at an international consulting company. Mrs Gautam works as a software developer for an IT company. They recently bought a modern upmarket apartment and plan to move in after the renovations are completed. Over the past couple of months, Mr Gautam has been receiving complaints from his colleagues regarding his poor performance at work. Mr Gautam has been given multiple warnings by his employer, who eventually recommends that he see a physician.
Mr Hugo and his family, current experience
Mr Hugo is in his late 60s, is from a White ethnic group, and lives with his wife in a large middle-class condo in Rio de Janeiro. Mr Hugo is a respected business administrator and still works every day. The company employees have been commenting about Mr Hugo “strange behaviour” and have spoken to the Human Resources (HR) department about it. The HR demanded Mr Hugo to take sick leave against his will, which really affected Mr Hugo’s confidence. His wife is concerned and has tried to convince Mr Hugo to book an appointment with his doctor, however Mr Hugo does not believe there is anything wrong with himself. He has got lost several times while driving his car, for which the police has been actioned once. He is now in risk of losing his driving license and Mr Hugo’s family is worried about his mental wellbeing, as well as his safety.
Mrs Fatima and her family, current experience
Mrs. Fatima is in her late 70s and lives with her daughter’s family in a riverside community located in a remote area in the midst of the Amazon forest. They all live together in the same small wood made house. Mrs. Fatima is descendant of the Tikuna indigenous tribe, with restricted Portuguese knowledge or fluency. Mrs. Fatima is well respected in her community as she has tried to keep her tribe’s culture ‘alive’ over the years. Mrs. Fatima has become increasingly withdrawn and has stayed alone inside her house most days in the past months. Her daughter is concerned as Mrs. Fatima has been having visual hallucinations, has become aggressive towards her small grandchildren, and has been forgetful. People who have been in her house have spread the news around the community that she is becoming ‘possessed’ with malevolent spirits. Mrs. Fatima’s family has consequently tried to keep Mrs. Fatima inside their house as much as possible, which has made her even more unwell. Her daughter has started to give her traditional herbal infusion hoping to calm Mrs. Fatima down. The city’s family health team visits the community once a month by boat, but Mrs. Fatima’s daughter fears that her mother will not accept help and so she has postponed/avoided talking to the health team about this.
Mrs Gloria and her family, current experience
Mrs Gloria is a 65-year-old retired teacher living within the rural area of St Thomas, Jamaica and seen as a role model in her community. She is currently the primary caregiver of her 15-year-old granddaughter, whose mother has been working in the United States of America for the last 10 years. In the last two years, Mrs Gloria’s 15-year-old granddaughter realises that she has gotten increasingly forgetful and has neglected duties such as cooking, cleaning, collecting her pension cheque from the post office and remittances from the Western Union sent from her daughter. At 15, Mrs Gloria’s granddaughter has now taken over these duties due to her grandmother’s challenges. The community members, who all know Mrs Gloria, have noticed the change in her behaviour and have seen her wandering at nights. Mrs Gloria also notices her decline in memory, but insists it is just “old age.”
Mrs Hari and her family, current experience
Mrs Hari, 68, lives in a remote coastal village 200 km away from the closest town. Mrs Hari and her husband live in a joint family of eleven, which consists of their two sons and their respective wives and children. The eldest grandchild is the first person from the family to go to college and lives in a hostel in a city. Mrs Hari comes from a long line of fishing families. All the men are local fishermen; in the off-season the family works on harvesting crops on their small farmland. Mrs Hari has always been active, strong-willed head of the household. Over the past year, she has been having memory problems, but this has remained unrecognized by the family. Recently, the family has observed changes in her behavior and personality, which has caused concern.
Mrs Jacqueline and her family, current experience
Mrs. Jacqueline is in her late 70s, is from a White ethnic group, and lives in a rural area in a remote part of Aquidauana city, in the state of Mato Grosso do Sul. Mrs. Jacequeline and her husband own a large cattle farm and have several employees living in little cottages around the large property. Mrs. Jacqueline has always been really active and never felt the need to have health checks. Recently, Mrs Jacqueline has suffered a stroke, which has affected all her day-to-day activities and has led her to develop memory impairment. Mrs. Jacqueline paid for all her care and exams privately and could pay for LTC services, however they live very far away from the main city and no service provider covers that area. Mrs. Jacqueline’s increasing health needs has forced her husband to stay at home to provide care, which has made him extremely stressed and tired as he feels totally unsupported. He is in his late 80s and is also struggling with his own health issues. Their two children live in other states and cannot come visit them easily.
Mrs Silva and her family, current experience
Mrs. Silva is in her late 70s, is from a Mixed-Race ethnic group (“pardo”), and lives in a remote rural area in Aquidauana city, state of Mato Grosso do Sul. Mrs. Silva is the maid of the large cattle farm owner and has lived with her family in a small cottage in that farm all her life. Mrs. Silva has always been really active and never felt the need to have health checks. Recently, Mrs. Silva has suffered a stroke, which has affected all her day-to-day activities and has led Mrs. Silva to develop memory impairment. Mrs. Silva’s increasing health needs has forced her daughter to quit her job and move in with her mother to provide full time care. Mrs. Silva depends on the public health service for all her health needs, and this is located within 20km distance by car. Her daughter has been extremely stressed and tired as she feels totally unsupported. She feels impatient with her mother and has used of physical restrains to contain her mom’s movements so that she can do the housework.