At least 73% of dementia costs are incurred by families, study reveals

At least 73% of the costs involved in caring for people with dementia in Brazil are borne by the patients’ families. The number was released by the National Report on Dementia in Brazil (Renade), from Hospital Alemão Oswaldo Cruz, based on the initiative of the Support Program for Institutional Development of the Unified Health System (PROADI-SUS). The study revealed that, in addition to the costs, those responsible for care are overburdened and that, in most cases, they are women.

The report shows that these costs can reach 81.3% for the family member depending on the stage of dementia.

“This involves hours of dedication to care. The person, for example, may have to stop working to take care of themselves. This all involves what we call informal costs. It is important to offer support to the family”,

said psychiatrist and epidemiologist Cleusa Ferri, researcher and coordinator of the Renade Project at Hospital Alemão Oswaldo Cruz.

The report lists direct health costs, such as hospitalizations, consultations and medications, and also indirect resources, such as the loss of productivity of the person who is the caregiver.

“Activities related to the care and supervision of people with dementia consume a daily average of 10 hours and 12 minutes”,

points out the report.

Look at the caregiver

Doctor Cleusa Ferri believes that it is necessary to increase the number of quality services that meet the needs of people with dementia and also their relatives. “The family member can even be a care partner. But we also need to think about this caregiver.”

To prepare the study, the researchers interviewed 140 people with dementia and caregivers from all regions of the country, with an average age of 81.3 years, 69.3% of whom were women. Data was collected from people at different stages of dementia.

The report shows, for example, that among the 140 caregivers, at least 45% of people showed psychiatric symptoms of anxiety and depression, 71.4% showed signs of care-related overload, 83.6% provided care informally and without remuneration.

The study draws attention to the fact that, within this sample, 51.4% of patients used, at some point, the private health service, 42% did not use any type of medication for dementia. “Only 15% took the medication free of charge from the SUS,” said epidemiologist Cleusa Ferri.

The study shows that the majority of people caring for family members with some type of dementia are women.

“In this sample, we have 86% of caregivers being women. This is a fact. There is a culture of women caring for the rest of their lives. I understand that it is a cultural issue.

Subdiagnoses

According to the researcher, Brazil has around 2 million people with dementia and 80% of them are undiagnosed. “The underdiagnosis rate is high. We have many people without a diagnosis and, therefore, without specific care for the needs surrounding the disease. So, this is a very important challenge”, says the expert. She mentions that this scenario is not exclusive to Brazil.

In Europe, underdiagnosis is more than 50% and in North America, more than 60%.

“In Brazil, we have 1.85 million people with the disease. And the projection is that this number will triple by 2050.”

The researcher adds that the invisibility of the disease is another challenge. “We have a lot to increase knowledge, make it more visible. The population’s lack of knowledge about this condition needs to be addressed.” In this context, invisibility also occurs in the face of social inequalities.

In a scenario where 80% of people are undiagnosed, this means the need to improve public policies to increase the population’s knowledge about dementia. “There is an issue of stigma too. People avoid talking about the topic and seeking help.”

This situation, in the researcher’s assessment, also contributes to difficulties in raising awareness, training caregivers and seeking support.

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