Family members bear 73% of costs of care for dementia in Brazil
At least 73 percent of the costs involved in caring for people with dementia in Brazil are borne by patients’ families. The figure can be found in the National Report on Dementia in Brazil (Renade), by the Hospital Alemão Oswaldo Cruz, an initiative under PROADI-SUS, the Program to Support the Institutional Development of SUS, Brazil’s national health care network. The study also reveals that the people in charge of providing care—most of whom women—are overburdened.
Depending on the stage of dementia, costs covered by family members can reach 81.3 percent, the report says.
“Care may require hours and hours of dedication. You may be forced to quit your job in order to provide care, for instance. They’re what we call informal costs. It’s important to offer support to the family,” psychiatrist and epidemiologist Dr. Cleusa Ferri, researcher and coordinator of the project, said in an interview with Agência Brasil.
The document lists direct health costs—such as hospitalizations, consultations, and medication—as well as indirect resources—like the loss of productivity of the caregiver.
“Activities related to the care and supervision of people with dementia take up a daily average of 10h12min,” the study points out.
Caregivers
Dr. Ferri believes the number of services for people with dementia and their relatives needs to be expanded. “Family members can be care partners, but we also must turn our attention caregivers.”
To carry out the study, researchers heard 140 people with dementia, in addition to their caregivers, from all across the country, with an average age of 81.3 years, 69.3 percent of whom were women. The data were collected from individuals at different stages of dementia.
The report indicates that at least 45 percent of the 140 caregivers had symptoms of anxiety and depression, 71.4 percent presented signs of care-related overload, and 83.6 percent were informal caregivers with no remuneration.
The study highlights that 51.4 percent of the patients had resorted to private health services at some point, adding that 42 percent did not take any kind of medication for dementia. “Only 15 percent got their medication free of cost from SUS,” Dr. Ferri noted.
The study shows that the majority of caregivers of family members with some form of dementia are women.
“In this sample, 86 percent of caregivers are women. This is a fact. Women are culturally expected to provide care for the rest of their lives,” she declared.
Underdiagnosis
According to the expert, Brazil has around 2 million people with dementia—80 of them undiagnosed. “The rate of underdiagnosis is high. We have a large number of undiagnosed people and, therefore, no specific care for the needs surrounding the disease. It’s a huge challenge,” she said, adding that this is not exclusive to Brazil.
In Europe, underdiagnosis rises to over 50 percent, and in North America to more than 60 percent.
“In Brazil, we have 1.85 million people with the disease. This number is likely to triple by 2050.”
The specialist added that the invisibility of the disease poses yet another challenge: “We have a lot of work to do to increase awareness. People’s lack of knowledge about this condition needs to be tackled.” In this context, invisibility is also rooted in social inequalities.
In a landscape where 80 percent of people are undiagnosed, public policies need to be improved in order to increase society’s knowledge about dementia. “There’s also the question of stigma. People avoid talking about it and seeking help.”
This situation, she went on to say, also makes raising awareness, training caregivers, and seeking support more difficult.
