Mrs A and her family, current experience | Indonesia

Mrs A and her family, current experience | Indonesia

25 Feb 2022

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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.