COUNTRY VIGNETTES | India

COUNTRY VIGNETTES | India

Introduction - India

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.

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, across the seven STRiDE countries. 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 applied to their country-specific context, the teams created additional case vignettes that represent scenarios particularly relevant to their context. The STRiDE India team created three case vignettes additional 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.

03 May 2022

Mrs A and her family, current experience - India

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 Anand is in her 70s and lives with her husband in a small village in rural South India. Mrs Anand’s daughter and her family live nearby. Over the last year her family has become increasingly worried about Mrs Anand, as she keeps losing things and puts items into odd places. A friend has told the daughter that Mrs Anand had been wandering 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 Anand 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 Anand 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 of arguments.

The daughter decides to take Mrs Anand to an traditional medical practitioner. The traditional medical practitioner prescribes Mrs Anand with some traditional medicines to address her mother’s forgetfulness and behavioural problems. The daughter follows the advice for over three months, but notices that her mother’s symptoms were worsening. She mentions her mother’s symptoms to an Accredited Social Health Activist (ASHA) worker (ASHA workers are community health workers that exist in most states, but are not trained in dementia identification).The ASHA worker suggests to see a physician at the Primary Health Center (PHC) 5 km away and offers to take Mrs Anand and her daughter there. The PHC offers consultations free of charge. The daughter tells the physician that her mother has been losing things and forgetting names of relatives. The family assumed this was a normal part of ageing, until she began to wander alone aimlessly. The physician examines Mrs Anand and suggests that they see a specialist (neurologist or psychiatrist) at a government medical college hospital 200 km away. In rural India, there is unlikely to be adequate support outside of families, though in some states NGOs may provide help through mobile medical services. Due to the distance, the family is unable to visit the specialist and are compelled to manage on their own. Mrs Anand’s husband cannot provide care for his wife on his own, as he is almost 80 and suffers from arthritis. Mrs Anand’s daughter has taken the primary responsibility of caring for her mother. Children are responsible for providing care to their parents as they age. As a result, the father expects the daughter to aid him in taking care of Mrs Anand. However, the daughter is struggling to manage her household responsibilities along with spending around 5-6 hours per day caring for her mother. It is more culturally accepted for the daughter to spend time in care provision and cut down on her other activities.

03 Mar 2022

Mrs B and her family, current experience - India

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 Bhatt is in her 70s and lives in mid-size town in North India. She was a homemaker and lived with her husband in a small flat until he died twelve years ago. She receives a small government pension scheme. When her son got married eight years ago, 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 Bhatt’s family became worried about her behaviour and memory. Now Mrs Bhatt mostly stays at home. She does not go out unless someone of the family accompanies her. Mrs Bhatt also stopped cooking, which she always enjoyed. Her daughter-in-law reminds her to take the medication she needs for other health issues and helps with dressing. Mrs Bhatt does not like being left alone in the house. Mrs Bhatt’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 Bhatt 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 Bhatt’s son takes his mother to the temple. He also notices that his mother has become very withdrawn. Mrs Bhatt’s son talks to their local pharmacist, who gives a few over-the-counter medications that Mrs Bhatt’s son pays for out-of-pocket. Over the course of few months, Mrs Bhatt continues to have changes in her behaviour. She is suspicious of any guest that visits and makes comments that are embarrassing for her family. The neighbors noticing this behaviour commented that Mrs Bhatt may not be well taken care off. The accusations add to the family’s frustration and stress with the situation. They try to isolate Mrs Bhatt from community gatherings and reduce their social interactions with their relatives and friends. Mrs Bhatt’s son takes her to their local physician at a private clinic nearby, who examines Mrs Bhatt and suggests that what she is experiencing could be natural signs of ageing. However, the physician recommends that they consult a specialist in the city 40km (1-1.5 hours) away. The son pays for the family physician’s service out-of-pocket. On one weekend, the son and daughter-in-law take Mrs Bhatt via bus to the city for the appointment. The physician assesses Mrs Bhatt and suggests a CT scan. Mrs Bhatt’s son and daughter-in-law bring Mrs Bhatt to the city for the scan another day. On the day of the follow-up, Mrs Bhatt, her daughter-in-law and son travel into the city again with the reports. The physician reviews the reports and diagnoses Mrs Bhatt with hypertension and dementia. He prescribes some medication. The daughter-in-law and son continue to make repeated visits to the physician in the city, as Mrs Bhatt begins to have other medical issues and severe behavioural problems. Mrs Bhatt’s son worries about costs, as he has already spent some of his savings on the tests and consultations. As Mrs Bhatt’s symptoms began to progress, she becomes unable to do basic activities such as eating, bathing, dressing, and using the bathroom. Mrs Bhatt develops pneumonia and is admitted to the hospital and then temporarily to a local private nursing home (smaller hospital). The daughter-in-law assumes the primary responsibility of caring for Mrs Bhatt. The son will be responsible for hospital visits, communication with medical professionals and taking medical decisions regarding care. Whereas, care with BADLs and IADLs is provided by the daughter-in-law. As a result, she has to step down from her role in the family business and spends around 12-14 hours per day providing care to her mother-in-law. She struggles to manage her other household responsibilities and give time to her children.

03 Mar 2022

Mrs C and her family, current experience - India

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.

About five years ago Mrs Chatterjee started to become forgetful. Now, 75 years old, Mrs Chatterjee hardly ever leaves her room in her daughter’s house— located in a metropolitan city—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 domestic help also provides additional support with caregiving. The family has to make sure that food is not too chunky as Mrs Chatterjee 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. Mrs Chatterjee’s other children visit during holidays but they find it difficult as she cannot always remember who they are. Mrs Chatterjee has also started displaying some changes in behaviour.

Mrs Chatterjee’s granddaughter suggested that her mother (Mrs Chatterjee’s daughter) take Mrs Chatterjee to a psychiatrist. Mrs Chatterjee’s daughter was initially reluctant to do so, as she was worried what the neighbours would think if they found out that she was taking her mother to see a psychiatrist. On the insistence of her daughter, she decides to visit a psychiatrist at a public hospital in their city. The next day, Mrs Chatterjee and her daughter visit the outpatient department (OPD) of a public hospital (30-40 minutes journey). They find that the psychiatric OPD timings are over for the day, so they have to come back another day. They come back a few days later, but the waiting time is long and they end up waiting for a few hours before they can see the physician. During this time Mrs Chatterjee gets increasingly agitated and the daughter almost considers going back home. Finally they manage to see a psychiatrist, who informs Mrs Chatterjee’s daughter that they need to do a few tests including an MRI and a neuropsychological assessment, but the waiting time to get these tests done is 1 month and 3 months respectively. The consult and tests are subsidized (assessment made by public hospital and is based on the family’s socioeconomic status) and paid for out-of-pocket. The family provides care as usual as they wait for the tests to be conducted. During the follow-up, the psychiatrist reviews the reports and diagnoses the mother with Alzheimer’s disease. He prescribes a few medications and refers them to a social worker at the hospital to provide them with further guidance. The social worker explains the diagnosis and advises the daughter to take Mrs Chatterjee to a day care center located 15 km away (1 hour by auto-rickshaw (three wheeler public transport)) from their house. The daughter has a discussion with her husband, and they agree to take Mrs Chatterjee to the day care center the psychiatrist suggested, as it is run by an NGO. However, the daughter is unable to take Mrs Chatterjee to the center daily due to her own household responsibilities and only manages to take Mrs Chatterjee to the centre once or twice a week. The daughter begins to attend a few caregiver support meetings at the center as well whenever possible. As Mrs Chatterjee symptoms progress, the burden of caregiving falls heavily on the daughter, who spends a minimum of 8-10 hours per day providing care. The granddaughter also helps when possible and spends around 2 hours per day providing care to Mrs Chatterjee. The constant care needs in addition to her managing her own family responsibilities has placed a major strain on the daughters marriage as well as her health.

03 Mar 2022

Mr D and his family, current experience - India

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 D’Souza lives by himself in a mid-size town in India since his wife passed away last year. He used to work as an assistant at a local pharmacy near his house, but retired over 13 years ago. His children have moved to the bigger city to work and can only visit once a month. His sons send Mr D’Souza  money every month in order for him to meet his living expenses. Over the last few months Mr D’Souza  has found it difficult to look after the house and himself. His son has noticed that his father does not seem like himself and is worried about him and what people may think if they see his father. He has observed that his father—who used to be very socially active in the community— has become very withdrawn.

On his next visit, the son takes his father to see a general physician at a private clinic nearby, who suggests that this could just be old age problems and prescribes some medication. The elder son pays the physician directly for the service. A few days later, his father’s neighbour calls him and informs him that his father has fallen and fractured his hip. The neighbour had already taken him to the nearest hospital to be treated by a medical physician, but Mr D’Souza would now require help around the house until his hip heals, as he is currently bedridden due to his injury. The next day, the elder son travels to his hometown in order to bring his father back with him to the city. As Mr D’Souza stays with his elder son in the city for a few days, the son notices that his father seems to be very confused and is having difficulty communicating his needs. Over the weekend, the elder son (after researching his father’s symptoms online) takes his father to the neurology out patient department (OPD) of a public hospital nearby. The waiting time at the hospital is long, and they only see a neurologist almost 3 hours after their arrival. During the appointment, the neurologist assesses Mr D’Souza  and recommends an MRI and a few blood tests. The waiting time for the scan is almost a month. The elder son pays for the consult and tests out-of-pocket, both of which are subsidized (assessment made by public hospital and is based on the family’s socioeconomic status). The father continues to stay with his son and more than a month later, they go back to the hospital with the reports for a follow-up. The neurologist diagnoses Mr D’Souza with dementia and prescribes medication. He advises the elder son that the disease would continue to progress and that Mr D’Souza would require someone to provide constant care for him. The elder son decides to move Mr D’Souza permanently to his apartment in the city, but struggles to provide the required care (helping his father with ADLs) for his father and also manage his own job responsibilities. As Mr D’Souza’s symptoms progress to a stage where he can no longer eat, dress or bathe himself without assistance, the elder son makes a decision to hire a full time attender from a private company that provides elder home care services. The attender is male and untrained (will be unable to do therapies targeted towards persons with dementia (e.g. cognitive stimulation)) and the service is highly expensive. The younger son also contributes towards the cost of keeping the full-time attender (out-of-pocket costs), but it is draining the savings of both brothers. This has impacted their future plans to get married and invest in houses of their own.

03 Mar 2022

Mr E and his family, current experience - India

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.

Mr Ebrahim has left his family many years ago to work in a metropolitan city in India. While he visited his family once a year, his children have become increasingly estranged and he has lost contact after his wife passed away five years ago. He lives on his own in a small flat. He had suffered a stroke years ago and was being treated by a physician. Since then Mr Ebrahim had developed mild memory loss, which has progressed over the past year. Mr Ebrahim now finds it difficult to remember appointments and sometimes loses his way back from shops.

Concerned that something may not be right, his work colleague (it is culturally accepted to share or discuss personal information with neighbours and colleagues) suggests that Mr Ebrahim books an appointment with a neurologist (it is possible in India to see a specialist directly) at a private hospital nearby. Mr Ebrahim books an appointment for the following week. During the appointment, the neurologist conducts a brief memory examination and suggests an MRI, asking for Mr Ebrahim to follow-up with him with the reports. Mr Ebrahim has the MRI the next day and pays for the expensive scan and consult out-of-pocket. At the follow-up appointment, the neurologist diagnoses Mr Ebrahim with vascular dementia. He prescribes Mr Ebrahim a few medications and advises him to seek additional help at home. Mr Ebrahim starts relying more on his driver and cook; who become his full-time attenders. He increases their wages. They are not trained or familiar with dementia care, but help Mr Ebrahim with daily tasks and activities. This may not be sustainable in the long run. If the estranged family refuses to take responsibility (when his health deteriorates further), the local NGOs or police (if contacted by friend/neighbour/domestic help) may take over and help in finding Mr Ebrahim a care home or assisted living facility.

03 Mar 2022

Mr Fawaz and his family, current experience - India

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.

On one of her medical check-ups with her general physician, Mrs Fawaz informed her doctor about the stress she is experiencing as a result of looking after her husband. The doctor suggested that she bring her husband in to see his colleague who is a neurologist. The neurologist examines Mr Fawaz and suggests an MRI and a few blood tests, which is covered by the government scheme. At a follow-up appointment , the neurologist reviews the reports and diagnoses Mr Fawaz with Alzheimer’s disease and prescribes a few medications. The neurologist suggests that Mr Fawaz will also require a speech therapist once a week, physiotherapy twice a week and occupational therapy once a week. He also recommends a counselling service for the wife for her anxiety. None of these services are covered by the government scheme and Mrs Fawaz is worried about costs. She has a discussion with her son in the US, who offers to cover the cost of these services and also suggests a private agency that sends home carers for elderly (he found this via the internet). The son pays for the service as well, as it is not covered under any government scheme and is unaffordable to Mr and Mrs Fawaz. Mrs Fawaz is reluctant to hire a full time attender, as she is worried about the lack of privacy and is also unsure about the reliability of the individual. However, as she struggles to provide constant care (12-14 hrs per day) to her husband due to her own health issues, she eventually agrees with her son to hire a full time attender. The attender lives with the family. Mrs Fawaz gets more respite time as a result of the attender, but she is worried initially about having a stranger living with them.

03 Mar 2022

Mr Gautam and his family, current experience - India

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 Gautam decides to visit his family physician at his private clinic for a consult. The family physician states that it is probably just stress that he is experiencing and advises Mr Gautam to exercise and engage in yoga and meditation. Mr Gautam pays for this service out-of-pocket. Mr Gautam continues to miss deadlines at work. He becomes very moody, has started hoarding stationary from the office supply room and recently misplaced confidential client files. The latter was considered unacceptable by his boss and Mr Gautam was fired.

With the loss of Mr Gautam’s job, Mrs Gautam starts to notice that her husband has begun to develop more behaviours that are not reflective of his personality and she decides to book an appointment with a psychiatrist at a hospital. She is very concerned as her husband’s father also had some undiagnosed behavioural problems before his death. The family has private health insurance coverage through Mrs Gautam’s job, that covers some hospital costs, tests and medications. At the psychiatrist appointment, the physician prescribes some medications and asks them to come back in two weeks for a follow-up. Mr Gautam’s symptoms continue to worsen, he begins to undress in public places and makes inappropriate comments to strangers or anyone that visits them. Friends and relatives start to avoid them and the family avoids social situations as well due to embarrassment. Mrs Gautam takes her husband back to see the psychiatrist, who suggests an MRI. They do the scan the next day and take the reports back to the psychiatrist, who then diagnoses Mr Gautam with frontotemporal dementia. He explains to Mrs Gautam that the disease is progressive and prescribes a few medications.

Mr and Mrs Gautam are not convinced by this diagnosis. They decide to get a second opinion from a neurologist in the same hospital. The neurologist sees the MRI and also diagnoses Mr Gautam with early onset frontotemporal dementia. Mrs Gautam’s mother-in-law helps take care of Mr Gautam and the children so that Mrs Gautam can continue to work. As Mr Gautam’s symptoms progresses, he develops severe behavioural problems. Mrs Gautam decides to hire a full time attender for her husband from a private elder care service company. The costs of this service is high and is exhausting her savings, as it is not covered under the health insurance scheme. Mrs Gautam eventually decides to admit her husband to a residential facility in the city since the family is having significant difficulty in coping with the behavioural problems. The cost of the residential facility is high and is also not covered by the health insurance scheme. Mrs Gautam decides to sell the house they had recently bought in order to meet the rising costs. The family’s lifestyle is affected, as they have to cut down on costs to meet the care provision needs of Mr Gautam. They also experience societal stigma for placing Mr Gautam in a residential facility, as caring for an ill loved one is considered a family responsibility.

03 Mar 2022

Mrs Hari and her family, current experience - India

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.

The daughter-in-laws have observed that she keeps forgetting the names of close relatives and is unable to carry out her daily chores. Mrs Hari has also been blaming her daughters-in-law for stealing her bangles and sarees, which has caused rifts within the household. Last year, the whole family went on a pilgrimage and made offerings to the gods to help heal Mrs Hari. The family feels that it may be a result of their past sins and due to such stigma attached, this may affect the family’s social standing in the community. The daughters-in-law continue to provide basic care by occasionally helping her with daily activities such as bathing, dressing etc. Mr Hari keeps an eye on her throughout the day. He often gets agitated with his wife’s behavior and tends to lock her in her room to prevent her from wandering. Mrs Hari’s symptoms began to worsen. She does not recognize her husband or family and is reclusive often not coming out of her room. When her grandchild comes to visit from the city, he mentions that they should seek a physician. The family cannot take Mrs Hari to the nearest town for an evaluation due to distance and the indirect costs (costs due to loss of wages) involved. They are compelled to manage on their own. The two daughters-in-law each spend 5-6 hours per day to provide constant care for Mrs Hari until her death.

03 Mar 2022