17 Nov 2021Brazil
Mrs. C may or may not be taken by her family to a public health doctor, a private doctor, or a doctor from a health insurance for assessment and diagnosis. In some cases, such as Mrs. C, the family may think the symptoms are a normal part of ageing and will look after her needs as these appear, never taking her to a clinician for a proper assessment. In some cases, medical doctors may also not be prepared to diagnose or may also think this is a normal ‘senile issue’, and so Mrs. C would stay without a diagnosis. This situation could result in poor care and support to Mrs. C and could cause family disarrangements due to lack of understanding about the dementia symptoms.
In Brazil, the delivery of health is organised in three levels of care: the primary care level – that is the gateway for accessing SUS, promoting education, evaluation and disease-risk reduction among families –, the secondary level of care which includes specialist care services, and the tertiary level of care which includes high-complexity procedures and hospitals. If the primary level health care doctor suspected dementia, Mrs. C would then be referred to the secondary level healthcare team (neurologist, psychiatrist or geriatrician) to establish diagnosis (with extra exams if needed) and pharmacological treatment. If these specialists are well trained for this, Mrs C would then receive a diagnosis, pharmacological treatment, and would continue to be assessed periodically by the secondary care team.
Mrs. C’s family (as well as neighbours and friends, if any) will likely to be the only source of support available for Mrs. C, both financially (if Mrs. C income is insufficient to pay for her own needs) and on the day-to-day-care, unless they can pay for care services privately. A few branches of the Alzheimer’s Associations exist around the country which can provide information and emotional support; however, as a standard rule, no support is available freely with regards to the physical care or respite services for carers. Only a few care homes are available through government and religious associations around the country, meaning that Mrs. C is likely to continue to be cared for at her family home until the end of her life.
There are home care services provided by the public health system, however very often these only include visits from professionals regarding healthcare/medical needs and not the care itself (feeding, bathing, etc.). If Mrs. C’s family lives in an area covered by the family health strategy, the team might provide some help with specific care needs in advanced stages of dementia, such as in case the person is using a feeding tube or in case of pressure injury or other would dressing. The care provided by families is fully unpaid and there are no allowances for family carers. Mrs. C would likely have a retirement pension and disability allowance could be provided in some cases.
The public health system offers health-care-related supplies in some cases (diapers, feeding tubes and enteral diet, materials for dressing wounds) and dementia medication is available freely through the SUS. Private services are expensive, mainstream private insurance usually do not cover continuous formal care, and dementia training is not common practice, meaning that the care received would probably not be ‘dementia friendly’.
People with dementia do experience stigma and are often disempowered. Lack of knowledge and awareness about dementia lead to late diagnosis, when people with dementia would no longer be capable of making decisions regarding their own care. Mrs. C’s daughter would probably be very unsupported by her own family and employer, which would probably make her quit her job, furthering the financial strains on the family.
The absence of a systematised support system to support carers makes it likely that Mrs. C’s daughter would also face stressful events and personal problems in her relationship with her own daughter given the restricted time they have to relax and enjoy each other’s company. It is unlikely that the family will have the option to put Mrs. C in a care home, but if this become a possibility, it is likely that they will be judged by her own family and friends.