Alzheimer’s in the periphery carries different challenges – 10/01/2023 – Balance

The symptoms of Josefa Maria Carneiro, 85, resident of Heliópolis, in São Paulo, began in 2001. The diagnosis of Alzheimer’s, however, arrived 21 years later, in 2022, through the SUS (Public Health System). According to her daughter, Maria da Luz João Alexandre, 53, her mother “never studied, she doesn’t know how to read or write”, and her only illness, until the discovery of dementia, “was high blood pressure”.

“She spent her whole life on the farm taking care of her children and her husband,” says the daughter, who works at a CDI (Center for the Elderly) and takes care of her mother on the weekends. The family takes turns spending time with the matriarch and includes her in conversations and walks, encouraging her to walk in the yard and do some exercise to “not lie down too much.”

“Until the day God allows, it’s about being present where you can, including everything you do, because that’s important. She likes to go to church, we take her. Giving affection and love is what we can do”, says Maria from light.

Residents of the outskirts of São Paulo are part of the group of people facing Alzheimer’s and other types of dementia in a context of social vulnerability. A study carried out by researchers from USP (University of São Paulo) showed that poorer regions of Brazil would be the main beneficiaries if risk factors for dementia, such as low education and hypertension, were reduced through effective public policies.

A survey published this year by Unifesp (Federal University of São Paulo) revealed that approximately 77% of Brazilian elderly people with dementia have not received a diagnosis. Women made up 60% of the sample and had a higher prevalence of the disease than men: 6.8% in them, to 4.6% in them.

On the outskirts of Ribeirão Preto, in the interior of São Paulo, live bricklayer Paulo Sergio Bedurin, 53, and his mother, Tereza Pereira, 85, who discovered Alzheimer’s about 6 years ago. From an active and independent person, the disease transformed her into a patient in need of full-time care.

The money that the mother receives through a government program for people with disabilities is used to pay a caregiver, “who provides baths and food”, according to Paulo.

“It’s only on Sundays that I can feed him and put him to sleep, but it’s difficult for me because of the wear and tear on my leg, I can’t bear the weight”, says the son, who maintains the house with temporary jobs.

In this context, better socioeconomic conditions, a factor linked to racial issues and gender inequality in Brazil, exert great influence. “Women are more affected, they are the ones who have less access to study, less able to move up to professional positions”, says Celene Queiroz Pinheiro, geriatrician and president of the Brazilian Alzheimer’s Association (São Paulo region).

The geriatrician highlights that in developing countries the risk is exponentially greater than in places where there is better access to healthcare. The situation is even worse on the outskirts, according to her. “There’s time wasted on public transport, the lack of a park, getting home and having to take care of the house. How are you going to get out of a sedentary lifestyle, what time do you exercise?”, asks Pinheiro.

Achieving an early diagnosis, quality treatment and rehabilitation is another point. “Within the SUS, there is a period of two to three years, on average, for the person to understand and start treatment, and we know that it is important to start as soon as possible”, he says.

With studies indicating an increase in the incidence of the disease in Brazil and around the world, the expectation is that national public care policies for people with dementia will be created. The strategy should include training health teams for early diagnosis, in addition to offering support, including financial support, to caregivers, according to the doctor.

“The State needs to play a more active role, it is a major public health issue. Each person with dementia needs three caregivers,” she says. “The family will become impoverished, it will take people out of the job market to provide care and there will be social costs, in addition to medicine and professionals.”

Ivanilda Basílio, 74, was diagnosed with dementia in 2020. The exams and consultations that led to her discovery of the disease were carried out by the public health system, in a process that her daughter Fabiana Basílio da Silva, 43, considers “very slow” .

“You go to a neurologist, a psychiatrist, a psychologist, an occupational therapist and, until they complete the entire report, until the body accepts the medications, it takes a long time. Apart from the cost. Today we get it through the SUS, but it took a long time We spent R$500 a month on medicine”, says Fabiana, who is one of her mother’s main caregivers, who lives in Heliópolis.

Obtaining a place at the CDI, where Ivanilda could receive multidisciplinary therapeutic support, was another obstacle. “Before that, we [da família] We come together to pay for a caregiver twice a week, but my mother has been at the daycare center since June and is a different person in terms of mobility and enthusiasm. I know there is no cure, but she is different, it has positively enhanced the treatment”, she reports.

Creator of the documentary “Alzheimer on the Periphery” (2020), Jorge Felix, professor of economics on the Gerontology course at USP, says that the city itself acts as an antagonist to the caregiver who lives on the outskirts, whether due to the precarious structure of the houses, the distance from medical centers or the cost of transportation.

For Felix, Brazilian legislation idealizes the family and delegates responsibility for care that, in reality, family members are unable to fully absorb. “Alzheimer’s, due to media representation in films and soap operas, has always fueled a perception that it is a rich man’s disease. In this way, poorer patients have always been made invisible”, he states.