When tax auditor Marcos Mei Vergani, 56, took over the care of his mother, Jandyra Mei Vergani, 91, diagnosed with Alzheimer’s at the beginning of last year, he noticed that there are still gaps in access to information about the condition and also support for family members .
For him, knowledge about the disease is still not widespread, which can cause an initial shock reaction when the diagnosis comes. “It’s a frightening situation, because Alzheimer’s is not the same as adults who naturally present issues related to aging, it is very specific, which is why it is essential to seek support in groups.”
And this is not an uncommon scenario. Alzheimer’s is the main type of dementia, accounting for 60% to 80% of diagnosed cases, and more than 10 million new cases are identified each year around the world. This Thursday (21), World Alzheimer’s Disease Awareness Day is celebrated, to strengthen the dissemination of information about the disease to patients and their families.
In addition to problems related to diagnosis, the supply of therapies currently available through the SUS focuses on medications aimed at controlling symptoms, but which do not act to contain the progression of the disease.
Recently, two new drugs approved by the FDA, the agency that regulates and inspects food and medicine in the USA, brought hope to patients and families of people. with Alzheimer’s. The drugs lecanumab (sold under the name Leqembi, from Biogen) and donanemab, from the American pharmaceutical company Eli Lilly, work by reducing the progression of the disease, with the latter showing up to a 60% reduction in cognitive decline in patients with any symptoms compared to the control group. .
Doctors and experts warn, however, that these treatments are not indicated for all cases of Alzheimer’s, they are only for those detected in the initial phase with mild symptoms of the disease.
Furthermore, both are still unavailable in Brazil. Eli Lilly has not yet requested registration of its drug with Anvisa (National Health Surveillance Agency). Until the beginning of this semester, there was also no deadline for when lecanemab could arrive in the country.
For now, the medications available in the country for treating Alzheimer’s are anticholinesterases (donepezil, galantamine and rivastigmine) and memantine, aimed at reducing symptoms.
“They are not drugs that modify the course of the disease, neither for Alzheimer’s nor for other dementias, and the fact that they are the same ones used for 20 years in the SUS is because for a long time they were the only drugs available”, explains Claudia Suemoto, associate professor of geriatrics at the USP Faculty of Medicine and coordinator of the university’s Brain Bank.
Compared to more recent therapies, these drugs have a modest effect. “We know that the long-term effects on patients are less than [os efeitos das] new drugs, and not all cases will have a response to these medications”, he states.
Suemoto also explains that the different stages of Alzheimer’s have different symptoms, and this will define the type of therapy involved. According to her, the symptoms are divided into cognitive and behavioral, and the phases into mild, moderate and severe (recently, researchers suggested changing the classification of phases to stages, as it is today for cancer).
Among the symptoms of the mild phase are recent memory loss and behavioral changes, such as apathy. In moderate cases, cognitive decline affects the patient’s functionality and requires supervision from another person.
“In the severe phase, memory loss is both recent and late, the patient is unable to judge, has a more pronounced loss of functionality, then difficulty eating and going to the bathroom alone, and then the main behavioral symptoms are aggression , hallucinations and also no longer being able to speak or walk”, says the teacher.
Precisely because this range of different symptoms is considered, the care of patients with Alzheimer’s involves more than just drug therapy, explains nurse Aline Gratão, coordinator of the Gerontology Outpatient Clinic at the University Hospital of UFScar (Federal University of São Carlos).
“When we talk about patient improvement, we talk about a multidisciplinary team, which will involve geriatricians, neurologists, nurses, nutritionists, psychologists, in short, a group of professionals who together will help that family member. And what we see is that, when there is this support, the caregiver himself reports how this helps in understanding and understanding that condition”, he states.
Understanding that aggressive behavior or attitudes related to memory loss are not the patient’s “stubbornness” also helps with acceptance. “There is a very strong stigma surrounding Alzheimer’s due to lack of knowledge. When you understand, this changes the whole scenario and, together with the multidisciplinary team, this caregiver is able to better cope with the situation”, he reflects.
A complaint from researchers on the subject is that confirmation of the diagnosis of Alzheimer’s often occurs at a late stage of the disease.
“It is clear how there is an improvement in symptoms when treatment begins in the initial phase, while the patient who did not start treatment at the beginning has a much greater loss of function”, explains the geriatrician and president of the regional São Paulo da Abraz (Association Brazilian Alzheimer’s Disease), Celene Pinheiro.
This was the case with Marcos Vergani. The mother’s diagnosis came when she was already in a moderate phase. “She had Covid in 2021. After she recovered, she complained of memory loss. I took her to a psychiatrist, who carried out tests and confirmed Alzheimer’s.”
Marcos’ support for caring for his mother came from both Abraz specialists and co-workers, who share experiences in caring for family members with dementia.
According to Pinheiro, three caregivers are needed for each patient with dementia. And the costs to society are enormous. “We need to consider that 80% of these costs are from removing a caregiver, an economically active, young person, from the job market to dedicate themselves fully to the patient, because the provision of this network in the SUS is very lacking.”