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.

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.