Mrs A and her family, current experience | Brazil

Mrs A and her family, current experience | Brazil

13 Nov 2021

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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.

Even though Mrs. Amélia does not like to go to the community health centre (primary care unit), her daughter would try to convince her to make an appointment with a doctor. Possibly, she would take her mother to a traditional healer before taking her to a doctor. Given her mother’s reluctance to go to the community health centre, it is likely that being seen by a traditional healer would be more well accepted by Mrs. Amélia.
Another possibility would be that Mrs. Amélia’s daughter and family would think Mrs. Amélia’s strange behaviour was part of a natural ageing process, so no further action would be taken to investigate her condition. However, supposing that an appointment with a doctor had been made, the consultation could happen in a primary care unit with or without the Family Health Strategy Program, depending on where they live.
The Family Health Strategy is the cornerstone of the primary healthcare system in Brazil, the program aims to expand, qualify and consolidate the delivery of healthcare to the population according to the precepts of SUS and involves healthcare teams that delivery person-centred care in the communities. The program currently covers about 62% of the Brazilian population. It is possible that after the first consultation with a GP, Mrs. Amélia would be referred to a specialist (neurologist, geriatrician or psychiatrist) who would establish or not the diagnosis of dementia. Not all doctors are well trained to diagnose dementia in Brazil.

A less likely possibility in a small village, would be that her family would take her to a private doctor (out of pocket or private insurance) in a big city. However, this would require more family support such as dealing with logistics, travel costs, consultation costs, etc. Her daughter would likely be the person taking on this role.
Assuming Mrs. Amélia had been diagnosed and had access to a family health team, the doctor would probably say to Mrs. Amélia’s family that Mrs. Amélia has memory issues and that these are a ‘normal’ part of ageing, even though a medication that is specific for dementia would likely be prescribed. Mrs. Amélia would probably have access to her medication free of charge via SUS (the Brazil’s Universal Health System) even if the consultation was with a private doctor. However, it might happen that for getting the medication free of charge, Mrs. Amélia’s daughter would need to travel to a health unit located in a larger city. It is likely that the doctor who gave her the diagnosis, as well as the family health team, would become the key professionals to support Mrs. Amélia with her needs.

Besides, she would make use of clinical services from the secondary level of care too. However, Mrs. Amélia or her family would not likely be referred to any psychosocial advice or support services in the community. As a note, it is possible that by the time Mrs. Amélia had finally been diagnosed with dementia, her symptoms would have worsened and she would probably be in a more advanced stage of the disease.

As Mrs. Amélia lives with her husband and nearby her daughter, this living arrangement is likely to be kept for a while until Mrs. Amélia and her husband’s independence start to be compromised. In such a case, her daughter would progressively become the main caregiver for Mrs. Amélia, meaning she would probably end up leaving her job at some point to take care of her mother. This situation could bring financial constrains to the life of Mrs. Amélia’s daughter as there is no payment cash transference by the government for informal/familiar carer in Brazil.

Unfortunately, it is likely that family members would not have enough information regarding dementia and so would probably not get involved with supporting Mrs. Amélia and her daughter. Information and emotional support for people with dementia and their carers can be delivered free of charge by NGOs, but these associations are not common in rural areas or even in urban areas. Thus, many people lack this kind of support and feel themselves even more burdened. People generally access the NGO services when they are “luck enough” to be told about the existence of them or when they discover the associations through searches in the internet. Public health campaigns are also meant to deliver information and support on dementia, but these campaigns are rare too.

Stigma is frequently experienced by people living with dementia and their family/carers in Brazil. Stigma can be specially observed in rural Brazil where, generally, not enough information on dementia is available. People tend to face the disease as a normal stage of ageing or as madness and there is a sense that nothing can be done for the person living with dementia and her family. Mrs. Amélia’s daughter would probably notice that friends and family members would gradually stop visiting them and would not use the term “dementia” to refer to her mother’s health condition. On the other hand, in a rural area people generally know each other and a sense of welcome and empathy might be built, resulting in less stigma and more support to Mrs. Amélia and her family.