Mrs B and her family, current experience | Brazil

Mrs B and her family, current experience | Brazil

15 Nov 2021

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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].

It has been two years since Mrs. Beatriz 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. Beatriz’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. Beatriz 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. Beatriz 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. Beatriz 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. Beatriz could also have access to therapies through healthcare insurance or paying for them privately.

If Mrs. Beatriz 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. Beatriz, however the government would not provide her with formal carers or any other human resources for the day-to-day care. Unless Mrs. Beatriz’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. Beatriz would probably continue to live at her son’s house for a long time.

Mrs. Beatriz’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. Beatriz’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. Beatriz’s daughter-in-law and less time dedicated to the family business. As time goes by, Mrs. Beatriz’s daughter-in-law would probably have to reduce her activities in the family business to spend more time caring for Mrs. Beatriz 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. Beatriz 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. Beatriz’s. family probably would not be able to afford it.

Although it is not a regular behaviour from family members in Brazil, Mrs. Beatriz’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. Beatriz and her family would experience stigma and lack of support from their friends and other family members. It is likely that Mrs. Beatriz’s nuclear family would be judge by other family members in case they decided to move Mrs. Beatriz 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. Beatriz.