Early Alzheimer’s reaches 45 and changes plans in adulthood

Graduated in administration and agricultural control supervisor, José Carlos Marcello was 47 years old when early Alzheimer’s, also called pre-senile, began to manifest its first symptoms. The administrator lost both of his jobs and received treatment for depression for three years before confirming the diagnosis of the rare neurodegenerative disease for his age.

His case was not the first in the family. The father and cousin were also diagnosed early, albeit at a slightly older age. His wife, secretary Denise Marcello, then 44 years old, realized that it was not depression because her husband had difficulties with seeing the time. “He always worked with numbers,” she says.

With the diagnosis confirmed, Denise sought support in online groups and lectures in order to better understand what they were going through. She created the “Early Alzheimer’s My Husband Has” page, which helped her come to terms with her situation and gave her the purpose of sharing her experiences to make the journey of other families less difficult.

“The worst thing in this situation is ignorance, not knowing the disease. I thought that everything he did was to insult me ​​and in reality it wasn’t. Everything that worked for me, I began to share with others personally and through the page”, says Denise. . In 2016, because of dysphagia (difficulty chewing), José Carlos needed to be hospitalized and spent his final years in a clinic, where he died in June 2022.

Early Alzheimer’s manifests between the ages of 45 and 65 and is similar to the one portrayed in the movie “Still Alice”, which won the Oscar for best actress for Juliane Moore in 2015. The disease is rare, but it is seen as a challenge because patients may face cognitive decline during adulthood, at an unexpected stage in life.

Fábio Henrique de Gobbi Porto, neurologist and scientific director of Abraz-SP (Brazilian Alzheimer’s Association of São Paulo), says that pre-senile corresponds to only 10% of cases, but evolves faster than in cases where the disease is discovered after age 80.

Early diagnosis, before severe loss of cognition, makes a big difference in the patient’s quality of life, since neurodegenerative processes begin to occur up to two decades before the first clinical manifestations.

“Dementia by definition is when you have cognitive loss with behavior change, but before it, the person still works independently, is functional and can decide what they want to do, if they want to work or take the dream trip”, he says. the neurologist.

Lifestyle changes can also slow the progression of the disease, such as giving up smoking, drinking and exercising, in addition to receiving cognitive stimulation, correcting hearing and visual impairments, controlling age-related diseases such as diabetes, thyroid dysfunction, hypertension or lack of vitamins like B12.

There is still no cure for Alzheimer’s, but, according to Porto, there are drugs that make the disease “get worse more slowly.” The difficulty is in realizing that the problem has arrived and starting treatment as soon as possible.

Luiz Roberto Ramos, professor at the Department of Preventive Medicine and coordinator of the Center for the Study of Aging at Unifesp (Federal University of São Paulo), says that the absolute diagnosis of neuronal damage caused by Alzheimer’s is still complicated.

“The person doesn’t notice it, nor does the family, because it’s a gradual ramp, unlike an individual with a stroke who went down a huge step overnight”, says Ramos. The researcher says that no one reaches the age of 90 without a chronic disease, but they can still have functional health that allows them to be independent and autonomous in society.

Former pharmaceutical retailer Maria Cecília Malta Mattos, 69, diagnosed six years ago with Alzheimer’s in a condition also considered early, discovered it in the initial phase and, therefore, manages to remain active.

The family noticed the disease when she started to have episodes of forgetfulness, but they thought it was fatigue. “I really miss my independence, to get in the car and drive from one place to another, but I’m aware that I can’t,” she says.

Maria no longer frequents high-traffic places, but still walks around the neighborhood with her faithful dog Petit. “A friend asked me if I wasn’t ashamed to say I had Alzheimer’s and I replied that I was ashamed of a friend like her. If she says that to another more sensitive person, instead of helping, it will make her hide”, she says .

Daughter Thayná Mattos Witts, 35, a teacher and psychopedagogist, is Maria’s main family caregiver. Thayná made a series of adaptations at home and in life to deal with her mother’s condition.

“She didn’t want to exercise, so we adopted a dog and I had a bracelet made with her data”, says the daughter. She also made a calendar to help maintain her mother’s autonomy, convinced Maria not to use the stove anymore and is now negotiating the placement of screens and supports in the bathrooms.

“Alzheimer’s suddenly becomes part of your life, but everything is adaptable and one day at a time. My mother doesn’t have to leave on a trip or go out, it’s a matter of organizing and adapting. party, we stayed two and she enjoys it”, he says.

The daughter says that participating in the support groups for families at Abraz-SP was essential for her, and that this year, for the first time, she will lead one of these groups.

“Sharing experience with those who are going through the same situation relieves a little. The biggest challenge is not blaming yourself for things that don’t work out and trying to reverse a situation that won’t be reversed either, there’s no cure, we keep learning”, account.

Worldwide, it is estimated that 55 million people are living with dementia and that the number of people affected is expected to increase to 139 million by 2050.