Mrs A and her family, current experience - Indonesia

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.

Due to the geographical location in a village in Bengkayang, West Borneo (about 2 hours motorcycle ride from Bengkayang district hospital, and about 5.5 hours to Pontianak, the province’s capital city), the family may have less or no access to information about dementia. It is quite likely that they may never even have heard of the word ‘dementia’ or ‘Alzheimer’. Forgetfulness in putting or locating items might be viewed as normal for someone at Mrs. Ani’s age.

However, as the cognitive impairment worsens and results in the person being disoriented and wandering about or getting lost, people might view this as a result of another psychiatric illness (namely schizophrenia) or attribute it to stress or supernatural causes.

The stigma surrounding this, the daughter’s concern about it, and Mrs. Ani’s dislike of going to the Puskesmas (primary care centre) most likely will delay or prevent Mrs. Ani from getting a diagnosis.

Puskesmas usually have a home visit team, but due to the numbers of patients and competing health issues, they might only send a home visit team when Mrs. Ani’s ability to do daily activities is already severely impaired or when she is no longer able to make a trip to the Puskesmas. At this point, it might also be difficult to bring Mrs. Ani to a hospital when referred there. Mrs. Ani would probably be visited by the Puskesmas home visit team or referred to a hospital when there is also another pressing health issue that needs immediate medical attention (e.g heart problem, stroke, emergency hypertension, or others).

In general, whether or not she gets a diagnosis on her cognitive impairment will depend on the family’s awareness of dementia and willingness to get a diagnosis. In this case, as the family lives in a small village in a rural area, it is most likely that people are not aware of dementia. Complaints of memory problems might be dismissed as normal ageing, even by healthcare professionals. Due to her old age, complaints about forgetfulness or changes in her personality most likely will be attributed to senility. Healthcare workers seeing Mrs. Ani, either through home visit or in the Puskesmas, most likely will attend to her other health issues.

The healthcare workers seeing Mrs. Ani will most likely advise the family to look after Mrs. Ani by assigning someone to accompany her 24/7, usually a family member. Mrs. Ani can join Posyandu Lansia once a month in her area. Here she can get monthly basic health checks. Depending on the area, her local Posyandu Lansia might have some additional activities such as group exercise. However, this is targeted to older people in general and not tailored specifically for people with dementia, and therefore might not give significant benefit to her cognitive function. Moreover, when she behaves ‘strangely’, others might complain about her.

The family is likely to look after Mrs. Ani until her end-of-life, with her husband as the primary carer. As her husband would most likely be retired too, this would not be making a lot of change in their income. However if the husband still works in the informal sector (e.g farming, etc), this might prevent him from working and thus affecting the family’s financial situation. The person responsible for caring might be different in other areas too, due to the cultural differences. In some cultures, female family members are most likely the ones involved in giving care, especially that the person needing care is a woman. To meet this need for an informal carer, it is most likely that Mr. & Mrs. Ani will move in with the daughter’s family. Over time, the daughter will most likely take over her father’s role as a the primary carer, and might have to give up work. The family might involve the extended family too to care for her.

It is unlikely that there will be a support group or other emotional support for the carers at the local level.

Depending on where she lives and the local cultural/spiritual beliefs, friends and relatives might say that Mrs. Ani’s problems is caused by supernatural factors, such as because of a sin, or santet (a curse sent by others). This might bring stigma to Mrs. Ani and the family, especially if Mrs. Ani starts to show aggressive behaviours. Their relatives might also convince them to bring her to traditional healers or even a witch doctor.

Other than spiritual beliefs, it is also quite common in Indonesia for psychiatric problems to be seen as the result of a distress (‘stres’). The family might also be stigmatised in this case, seen as the cause of Mrs. Ani’s distress, or unsupportive of her, resulting in her cognitive decline or behaviour changes.

Mrs B and her family, current experience - Indonesia

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].

In this case, Mrs. Bunga relocated from her old home to her son’s family home in a mid-size town (such as Salatiga or Malang).

In the JKN scheme, one has to go to a designated local Puskesmas/primary care clinic, which is based on the address in one’s National ID card. This means Mrs. Bunga’s family has to first apply to change Mrs. Bunga’s ID card or request a letter from local authorities stating her current domicile. This letter will then be used to apply to move her primary care clinic to one that is local to her son’s house. It will be approved as long as they have all the required documents, but the process might take some time (from 1 week – 1 month).

If they do not have all the required documents, the family might have to pay out-of pocket for Mrs. Bunga’s healthcare services. In this case, Mrs. Bunga’s family

When this has taken place, she can then be seen in the Puskesmas for a screening under the JKN scheme. The GP in Puskesmas will perform a screening, and if they find anything concerning, will provide a referral letter to take with them to the next healthcare facility (hospital).

Being in a mid-size town might give an advantage to Mrs. Bunga, as her family might be more aware about dementia through local Alzheimer association activities in that town or a neighbouring town or from the media. The healthcare practitioners there might have undergo training provided by the government or organisations about geriatric problems or even dementia. Moreover, the size of the healthcare workforce might be greater, and thus Mrs. Bunga can immediately be seen.

After being screened in the Puskesmas, if Mrs. Bunga is suspected to have cognitive impairment or other serious health conditions, she will be referred to a 2nd level referral hospital. If she has other serious conditions, such as a heart problem, she will be quickly referred. As the family might have heard about dementia or Alzheimer, they might bring this up when seeing the GP, and thus the GP will be aware of the possibility and put this in the referral letter.

As it is a mid-size town, it most likely has a 2nd level referral hospital. Transportation will have to be paid OOP, but since it is in the same town, the cost might not be too high.

In the hospital, Mrs. Bunga will be seen by a specialist. Depending on the GP’s referral, she might be referred to an internist/geriatrician/neurologist/psychiatrist. The specialist will order tests to exclude possible reversible causes of her cognitive decline. If there are no reversible causes, Mrs. Bunga will be referred to a neurologist/psychiatrist/geriatrician (if not yet) in the same or another 2nd level referral hospital – or if not available, referred to the 3rd level.

Neurologists, psychiatrists, and geriatricians will have been trained in dementia during their training, regardless of where their training took place in the country. Mrs. Bunga would undergo tests and if found to have dementia, they might prescribe her dementia medication. The medication have to be paid OOP if it is prescribed in the 2nd level of referral hospital.

If the family choose to get the medication under JKN coverage, they need to seek a referral to the 3rd level, which will be in the provincial capital (might take 1-2 hours trip covered OOP for the transportation cost). They need to come back every month to refill the prescription, which means spending more time and money on transportation.

If they choose to shoulder the OOP costs, it is more likely that Mrs. Bunga will get all the diagnostic and treatment at the 2nd level referral. This means less time travelling to get the prescription refill, but bigger cost on the medication.

If Mrs. Bunga’s family is from a middle-upper socioeconomic class, they might bypass the long referral process by bringing her directly to a neurologist/psychiatrist/geriatrician at a nearby 2nd level referral hospital and pay OOP. They would also probably hire a lived-in paid carer to assist with her daily activities. This is a quite common choice in the middle-upper socioeconomic class. This paid carer most likely has not had a formal training about dementia, but if they already have much experience working with older people, they are usually quite patient and resourceful.

In Indonesia, the caring role is usually taken by a female member among the person’s family or friends. Mrs. Bunga initially helped with caring for her grandchildren. When her condition deteriorates, her neighbour or her pengajian friends might come in to help assist with domestic tasks (caring for the grandchildren, cooking, etc). However, when she can no longer perform her daily activities independently, she will gradually need a 24/7 assistance. Most likely it would be her daughter-in-law who will take the role of the primary carer. This means she will gradually have to leave her role in their business, and it means the husband have to shoulder more responsibility at work. This might also threaten their business stability and thus their family’s financial stability, if they are not yet in a position to hire a staff.

The family might be able to seek post-diagnostic support/information from a local dementia association, or if there is none in their town, in the nearest town. With the current pandemic, it is more likely that they will seek information and support through online means.


Mrs C and her family, current experience - Indonesia

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.

Mrs. Cicih has two daughters. She lives with her first daughter, who has a small bakery. She is currently largely dependent on her daughter in doing daily activities such as preparing food, taking a shower, or going to the toilet. Her daughter is struggling to help Mrs Cicih with all these activities, given her business and her health problems. The daughter herself is also currently being treated for back pain problems and experiences back pain when doing certain activities. Therefore, Mrs. Cicih’s granddaughter also helps her in doing some of her daily activities.

The house is located just behind the bakery. The first year Mrs. Cicih moved in with her daughter, she often went to the bakery and try to help. However, this has made customers scared or uncomfortable because sometimes she gets easily angry or scolds customers’ children. Therefore, the daughter decided not to let her mother come into the bakery anymore and locked the connecting door between their home and the bakery at all times.

Mrs. Cicih’s family brought her to a consultation with a family doctor close to their house when she started becoming forgetful. This family doctor referred her to a neurology specialist at the 2nd  level hospital which they paid under their own expense. Mrs. Cicih was diagnosed with dementia, besides an uncontrolled hypertension and high cholesterol level. She was prescribed several medications: antihypertensive and cholesterol drugs, dementia medication (Donepezil), all paid OOP (by Mrs. Cicih’s second daughter). Mrs. Cicih did not use the JKN (national health insurance), because the closest hospital providing the service she needs under this scheme is too far from her home.

After prescribed Donepezil for 5 years, the family reported there is no improvement and Mrs. Cicih seems to deteriorate faster. The doctor recommended adding Memantine, but the price of the drug is expensive, and is not yet included in the JKN-covered list of drugs.

Two years ago, Mrs. Cicih had a stroke, and since then has had swallowing problems. For her swallowing problem, a routine swallowing therapy is done once a week in the hospital with a speech therapist. However, in the last 2 months her daughter was unable to facilitate visits to the hospital due to time constraints in managing the bakery that could not be left behind and the current condition of Mrs Cicih’s disease. Currently, the hospital where Mrs. Cicih is being treated is not able to offer online consultation yet, so Mrs. Cicih has to come to the hospital, which poses her to a higher risk of contracting COVID-19 during this pandemic. Due to the pandemic, now the swallowing exercise is done at home with a speech therapist on the family’s expense.

Mrs. Cicih’s granddaughter is studying in a university, but often had to miss her classes when her mother is busy with the bakery and someone needs to care for Mrs. Cicih. Mrs. Cicih’s granddaughter found information about dementia and Alzheimer Indonesia from social media and contacted the organisation. Since then, the family has participated in several Alzheimer’s Indonesia support group activities. These activities have helped the family to increase their knowledge about dementia. They are aware that they need to divide responsibility so that the burden of caring is not only shouldered by the first daughter and the granddaughter. However, it is hard for them to seek help from other family members, as all their extended family members live across the country.

Mrs. Cicih’s other daughter who lives outside the city sometimes visits her, but Mrs. Cicih was not very close to this daughter, and no longer remembers her. Therefore, the two daughters giving care alternately to Mrs. Cicih was not a favourable option. The daughters had previously come up with an agreement that the one who lives far helps in financing Mrs. Cicih’s healthcare costs, and they intend to continue this. Although they have come up with this agreement, there are sometimes arguments and tension between the two daughters, as the first daughter (who has experience burnout) often feels left alone or ‘lectured’ by her sister on how to care for their mother.

In their culture, caring for older people is usually done by a female member, especially when the older person is female. Therefore, Mrs. Cicih’s daughters do not think it is possible to involve their husbands in the care. Moreover, Mrs. Cicih’s son-in-law who lives with her works 9 to 5 as an employee in a medium-scale company in their town, and often has to stay for overtime.

Mrs. Cicih’s first daughter had also thought of entrusting her mother to the nursing home with her current condition, but she was worried about the stigma it will bring upon the family. In her area, just like almost everywhere else in Indonesia, she might be viewed as not taking responsibility and giving attention to her parents by entrusting her mother’s care to a nursing home. She is also scared of ‘committing a sin’ by doing it. Besides that, Mrs Cicih’s daughter is worried that her mother will meet other older people with serious mental problems. Not all nursing homes are trained on providing care for people with dementia, and some nursing homes also do not accept people with dementia. She has been looking for a good quality nursing home which staff are trained in dementia, but the fee is very expensive, starting from IDR 21 million/month (approximately 1450 USD, as per June 2021).

She has also been trying to find a professional caregiver, but the cost (although lower than a nursing home) is still a barrier, especially during the pandemic, which reduces her bakery’s profit. A paid caregiver experienced in caring for older people can cost starting from IDR 4.5 million/month. Therefore, in the meantime, they keep the caring arrangements as such.


Mr D and his family, current experience - Indonesia

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. Doni is a widower in his 70s who lives by himself. His son works in a bigger town 4 hours away by bus from his town. Recently, his neighbour informed his son that Mr. Doni often forgets to lock the gate and turn off the garden lights. The son notices that his father often repeats the same questions on the phone.

It is difficult for his son to take his father to the doctor since they live in different towns. His son finally took two days leave from work to take him to the hospital. As Mr. Doni is accessing services using the JKN and it is not an emergency, he was taken to Puskesmas to be seen by a GP, who then referred him to a 2nd level referral hospital. The neurologist in charge performed several examinations, such as laboratory tests and MRI. Upon examination, the neurologist also found that Mr. Doni has diabetes and hypertension.

To Mr. Doni’s son’s understanding the changes in his father are due to the diabetes and hypertension. Despite having the lab and MRI results, and the neurologist explained that Mr. Doni’s MRI showed a ‘shrinking brain’ and ‘minor old strokes’, he did not understand the neurologist’s explanation very well.

The doctor gave Metformin for his diabetes and Captopril for his hypertension, and asked Mr. Doni to come for regular assessments. He sent him for a back-referral to the Puskesmas for the diabetes and hypertension medications, which he can refill monthly. Mr. Doni’s son thinks that by taking the medication provided, Mr. Doni will get better and able to care for himself again. However, because Mr. Doni’s son had to go back his work in another town, he could not take his father for this regular appointments with the GP in Puskesmas. With his cognitive function declining, Mr. Doni cannot go to the Puskesmas by himself, so his son asked for a neighbour’s help to take him there monthly. However, with the current pandemic, the neighbour (who is about the same age as Mr. Doni) is scared to go to the Puskesmas, and Mr.Doni could not get his drug refills on time, which resulted in uncontrolled diabetes and hypertension. Moreover, even before the pandemic, the care the Puskesmas provided is just focused on his diabetes and hypertension. The GP did not mention that anything could be done about his dementia.

The son had thought about the possibility of sending his father to a nursing home, but he was concerned that there would generate a negative response from the extended family. Worried that his father might fall when alone or the risk of fire due to his father forgetting to turn off the stove in the kitchen, he finally installed a CCTV at his father’s home to help monitor him remotely. Mr. Doni’s son contacts his neighbour (the same one who used to bring Mr. Doni to Puskesmas) whenever he noticed anything concerning. In the past 5 months, Mr. Doni has been having trouble sleeping at night, and there was several instances that he wanders outside the house. Fortunately, security guards around the area found him.

Concerned about Mr.Doni’s safety and health at home, his son tried to find a male live-in nurse for him, but he could not find any. There are fewer male nurses in the home care workforce, especially in that small town. Moreover, the cost is too expensive for Mr. Doni’s son to bear.

Because his father lives alone, hiring a live-in female nurse is less preferable, as in the community it would be frowned upon. At the moment, the community around Mr. Doni is supportive towards him. The community think these problems related to memory problems or getting lost are something common for an ageing person, and thus the neighbours are willing to help keep an eye on Mr. Doni.

His son happened to read an article in a popular online media, covering about dementia. The article also refers to a link on a video of common symptoms of dementia. When he saw the video on common signs of Alzheimer, he felt that this is similar to what he sees in his father. He went on the internet to search for more information, and learnt about Alzheimer Indonesia online. He has since joined several of the organisation’s activities. He signed up for the Care Navigator programme and had a few online consultations with experienced family caregivers. They recommended him to do video calls with his father regularly and make a logbook/journal to keep track of his medical history, medications, day-to-day events, and future appointments. He was advised to strengthen his support system by involving neighbours to help look after his father, starting by providing information regarding dementia to them. He was also advised to hire someone as a carer to help Mr. Doni in his daily activities such as buying groceries and household chores, preparing food, taking daily medication and getting the drugs refilled at the Puskesmas. The carer does not necessarily have to be a nurse, and he was also informed that Alzheimer Indonesia has a dementia care skills training module he could enrol the carer to, if needed.

Mr.D’s son work fulltime and is away all day, so moving Mr. Doni to live with him is not feasible. There are no day centres yet in the town where the son works. Mr. Doni’s son has been looking for a live-in male carer, but still has not been able to find any in his father’s town. Later on, Mr. Doni’s son hired a younger male neighbour to come help clean the house and prepare food for Mr. Doni on weekday mornings. This neighbour could not stay during the rest of the day or come on weekends due to another job. Mr.Doni’s son tries to visit and stay over at his father’s during weekends, or arrange for another neighbour to come help when he cannot come.

When the neighbour comes to clean the house in the morning, he rarely sees and communicates with Mr. Doni, because he thinks Mr. Doni is not very approachable. Mr. Doni prefers to be alone in the room and doing almost all of his activities, such as eating, in the bedroom. He has also grown a bit irritable, easily angered by small things. Therefore, although the young neighbour is polite towards Mr. Doni, he prefers not to see him if not needed and to just do the household chores.

Mr. Doni’s friends and other elderly neighbours often invited him to join social activities before the pandemic, but he kept refusing. During the pandemic, there are an online meetings and health education organised by their local Posyandu Lansia, but due to the complexity of accessing online meetings, Mr. Doni become even more isolated. His son continues to look for a full-time live-in male carer, in hope that the carer could be a company to his father too, besides looking after his wellbeing.


Mr E and his family, current experience - Indonesia

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 Edi left his family many years ago to work in Jakarta as a street food vendor. He only visited his family once a year, and did not have a good relationship with his children. His children became increasingly estranged and he lost contact with his children after his wife passed away five years ago. He lives on his own in a small flat. Mr Edi finds it difficult to find his way to the shops and back, has difficulty remembering appointments and often forgets about eating.

Mr. Edi’s friends still check on him regularly. Mr. Edi is concerned about his health because he keeps forgetting his way to the shops and forgetting about his appointments with his friends. Some of his friends think it is a normal part of ageing but they ask him to go and get himself checked by the doctor. Mr. Edi had heard about Alzheimer’s Disease, so he decided to check himself to a Puskesmas near his house. Mr Edi had been screened in the Puskesmas and got a referral letter to the next healthcare facility (second level referral hospital), but he forgot the date of the appointment to the next healthcare facility, so he needs to make another appointment.

Mr. Edi’s friends volunteer to help Mr Edi get to the hospital, so that he can be tested and get a diagnosis by a neurologist/psychiatrist/geriatrician. Mr Edi receives Donepezil as a dementia medication. However, at this level of referral, any dementia medication will still have to be paid by Mr. Edi and because Mr Edi is retired he has difficulty paying for the medication. He also often forgets to take the medication.

Mr Edi’s friends try to contact his children because they see that his health is deteriorating. He is no longer able to go out and buy groceries, and sometimes soiled his pants. His friends or neighbours who visit him had to help him cleaning himself. However, as he lives alone, it might be a few days until someone visits him and finds out about his condition.

His oldest daughter came to visit Mr. Edi, but Mr Edi did not recognise her anymore. His daughter discusses with her other siblings and they decide to move their father into a nursing home.

Mr. Edi’s children find a nursing home operated by a religious organisation similar to Mr. Edi’s faith in the outskirts of Jakarta. They provide an array of activities such as music and art sessions. The fee is hardly manageable if all his 3 children chip in to pay for the nursing home.  However, upon learning that Mr. Edi has dementia and would gradually need support 24/7, the nursing home explained that they only accept residents with dementia or severe disability with the condition that the family will provide a carer themselves because they do not have enough staff to provide adequate care for highly-dependent residents. Adding the cost of a paid carer makes the cost absolutely unaffordable for the children.

The children have contacted several government-managed nursing homes, but all are full. Considering this, the children decided to ask Mr. Edi’s neighbours to continue looking after him and send a monthly payment as an incentive. However, after COVID-19, the payments stopped.

During the COVID-19 pandemic, Mr. Edi was infected from one of the neighbours who came and visited him. He was found to be infected through contact tracing done by the Puskesmas and was hospitalised due to moderate symptoms. During the hospitalisation, none of his children could be contacted.

Upon recovery, Mr. Edi still needs oxygen supply constantly and his ability to walk has decreased significantly. Considering his next of kin cannot be contacted and the neighbours’ inform they no longer can care for him with his current condition, the hospital contacted the Provincial Department of Social Affairs. Their staff came and assessed Mr. Edi, and decided that he could not live alone anymore. They arranged for him to be discharged to one of the government’s nursing homes in Jakarta.

Mr. Edi was placed in a ward for people who needs constant assistance. The ward consists of a large room with about a dozen residents, with three staff caring after them at a time. Despite trying as best as they can to provide care, the staff are overworked and sometimes cannot meet all the residents’ needs. Mr. Edi is now bed-ridden, and was given adult diapers due to his incontinence. The staff noticed that he is at risk of pressure ulcers, and try to move him every few hours. However, the staff struggled to make sure this can be done, in between giving medications, ensuring his oxygen cylinder is refilled on time, and caring for other residents. After a few months, Mr. Edi developed a pressure ulcer. He was referred to a GP from a nearby Puskesmas who came to the nursing home twice a week, and was given medications. However, this did not resolve, and resulting in recurrent infections.