15 Nov 2021


It has been two years since Mrs. B changed behaviour and has not been taken to a doctor. This means she might have never been taken to a consultation and, as the disease progresses, her nuclear family would just try to adapt themselves to the situation, somehow sharing Mrs. B’s care needs between them, but without expecting any support from the community or extended family. However, there is still a chance her family would take Mrs. B to a free consultation with a general practitioner (GP) who is part of the SUS (universal health system) or would take her to be consulted with a private doctor (out of pocket or institution private insurance). In any of the cases, Mrs. B could be diagnosed or not, as many doctors still have no special training in dementia, even in mid-size towns in Brazil. Therefore, she might have received the diagnosis with some delay.

After being properly diagnosed with dementia, Mrs. B would be prescribed medication that is accessible free of charge via SUS at the point of access. Although SUS offers non-medical treatment such as physiotherapy, phono audiology etc. it is unlikely she would be referred to these treatments given a possible lack of knowledge by doctors (for instance) that might not associate these treatments with helping people living with dementia. Mrs. B could also have access to therapies through healthcare insurance or paying for them privately.

If Mrs. B lives in a region covered by the family health strategy, some professionals such as doctors, nurses, dentists, physiotherapists and community health workers could provide information and sporadic support (e.g. home visits once a month to follow up on specific issues) to Mrs. B, however the government would not provide her with formal carers or any other human resources for the day-to-day care. Unless Mrs. B’s family decided and managed to get one of the few places in a long-term care home (probably a philanthropic or private one as the public ones are nearly non-existent), Mrs. B would probably continue to live at her son’s house for a long time.

Mrs. B’s wider family could give some sporadic help, but normally, the day-to-day chores and care would be provided by her nuclear family (mainly by her daughter-in-law). Mrs. B’s limiting condition would increase her family’s worry regarding her health and would require more time spent to meet her caring needs, resulting in a more stressful routine to Mrs. B’s daughter-in-law and less time dedicated to the family business. As time goes by, Mrs. B’s daughter-in-law would probably have to reduce her activities in the family business to spend more time caring for Mrs. B and the house. This could restrict the family income as there is no payment cash transference program in such cases by the government. Another option would be to pay for a carer for Mrs. B so that her daughter-in-law would not be at risk of stopping to work in the family business. However, paying for a carer can be very expensive in Brazil and Mrs. B’s. family probably would not be able to afford it.

Although it is not a regular behaviour from family members in Brazil, Mrs. B’s family members could get advice about dementia through some older people’s association, family health strategy team or community health centres (as they might exist in the town). Some of these services could be accessed free of charge through SUS. It is possible that Mrs. B and her family would experience stigma and lack of support from their friends and other family members. It is likely that Mrs. B’s nuclear family would be judge by other family members in case they decided to move Mrs. B to a long-term care home. Not much support would be available from their relatives regarding daily care tasks, as they might feel impatient when dealing with Mrs. B.