Personal archiveCeres at her home in São Bernardo do Campo, São PauloPersonal archive
I think I inherited my love of studying from my father. He was a military man, a polyglot, and he was passionate about Greek mythology—hence my name, Ceres, after the goddess of agriculture and Earthly fertility. My parents separated in 1959, when I was seven years old. We lived in Rio de Janeiro at the time and my mother raised me and my two siblings alone. She worked as a dressmaker, a profession that was in great demand in Rio’s haute couture. I am the youngest in the family. My sister and I went to a boarding school run by nuns, while my brother went to a military school.
As soon as I finished high school, my mother moved us to São Paulo—she wanted to start a new life with her children in a different city, away from my father. I was 14 years old and our financial situation was complicated. I had to leave school temporarily to work as a telephone operator at a car dealership, but I kept on studying alone at home.
Later, I took a course in surgical instrumentation and began practicing the profession. In 1974, at the age of 22, I got married. Four years later, my husband and I moved to São Bernardo do Campo, on the outskirts of the São Paulo state capital. My mother lived with us and started behaving a little strangely. She seemed to invent situations that would cause misunderstandings and discord in the family, but my brothers and I thought it was just a manifestation of her genius.
I already had a daughter, Renata, who was 3 years old at the time, and I was pregnant again. In 1979, three days before the birth of my second daughter, Roberta, my mother suffered a heart attack. She recovered, but was soon hospitalized again with heart failure. One day, the ICU doctor called me. He said that my mother was suffering from hyperactive delirium, screaming and accusing the patient in the next bed of having robbed her the previous week.
My son, André Luiz, was born in 1981. My mother only got worse: she started getting into debt and became even more frequently involved in misunderstandings with acquaintances and family. She was also suffering from memory loss and spatial disorientation. I took care of her by myself, intuitively, without much information. I thought she was going crazy.
She was only diagnosed in 1985, and it was completely by chance. I was working as a scrub nurse on a team of three orthopedists, and one day I accompanied one of these doctors to surgery. The person being operated on was a patient of geriatrician Flávio Sepúlveda, who was also present. My eyes were swollen that day, and my boss asked me if everything was ok. I told him about what my mother was going through, and Dr. Sepúlveda overheard my story. When the surgical procedure was over, he offered to help.
At my mother’s first consultation, Dr. Sepúlveda requested a CT scan, which turned out to be crucial in determining that my mother had Alzheimer’s disease. From then on, he monitored her as her physician, and with the correct treatment, both of our lives improved. My mother started sleeping better and having calmer days, as much as was possible. She passed away four years later, in 1989, after having lived with the disease for around 13 years.
At around the same time, I passed two university entrance exams: one for law and the other for philosophy. I chose the second option and started the course in 1990. But my experience with my mother had had a profound impact on me and I soon decided to take another path: I switched to studying nursing at the São Camilo University Center in São Paulo, where I graduated in 1994. My aim was to understand the elderly in depth and to later pursue neurology to work in education, care, and research, so the following year, I began studying social gerontology at the Sedes Sapientiae Institute. From then on, I didn’t stop.
Personal archiveCeres with her mother in 1985Personal archive
In 1997, at the age of 45, I began a master’s degree in neurosciences at the Behavioral Neurology Department of the Federal University of São Paulo [UNIFESP]. Under the supervision of Professor Paulo Henrique Ferreira Bertolucci, I investigated the role of nursing in dementia and the risk factors of early institutionalization of people with the disease. I did my PhD at the same institution between 2000 and 2004, with the same supervisor. In the 12 years I spent at UNIFESP, I created Brazil’s first dementia nursing protocol and headed the Dementia Education and Caregiver Assistance programs, in addition to the Home Visit program.
In 2011, I was invited to participate as a researcher in the Cognitive and Behavioral Neurology Group [GNCC] at the Hospital das Clínicas of the University of São Paulo’s School of Medicine [HC-FMUSP]. I was mentored by professors Ricardo Nitrini and Sonia Maria Dozzi Brucki, who supported me in the development of two initiatives.
One of them, started in 2011, is the CAAD project, which analyzes the costs of dementia. It was the first study of its kind in our country and became the subject of my postdoctoral fellowship at USP. In this project, which I still coordinate today, we perform financial analyses of the direct and indirect costs incurred by the families of patients with dementia. The first results, published in 2015, revealed that 60% of these costs are linked to paying professional caregivers or long-term care institutions. The latest results, from 2018, showed that the average monthly expenditure per patient across all three stages of the disease is US$1,379.02, which is a lot of money for the average Brazilian.
The other initiative, which was also established in 2011, is GNCC-Suporte, a program that holds meetings for family members of people with dementia, as well as care professionals. The meetings originally took place in person, but since the COVID-19 pandemic they have been online, now taking place on Mondays and Fridays, from 8 p.m. to 9 p.m. We also have a group on a messaging app that currently has around 130 members, 90% of whom have relatives with the disease.
Throughout my academic life, in addition to thinking about caregivers, knowing from my own experience all the challenges they face, I have also had the opportunity to work directly with people who have dementia. They often do not receive adequate nursing care and are further stigmatized and infantilized with the use of diminutives, instead of being called by their real name. In my opinion, both verbal and nonverbal communication together complement the care process, which demands deep empathy, kindness, and respect for others.
Despite the enormous challenges, my work gives me a great sense of fulfillment. In 2021, I had the privilege of contributing to last year’s Brazilian Consensus on Dementia, published by the Brazilian Academy of Neurology [ABN], for which I wrote about care in the severe phase of the disease. I am currently working with the GNCC as a collaborating researcher, as well as working in a private practice.
But my story doesn’t end here. At 72 years old, I dream of creating a public program in Brazil similar to the United Kingdom’s Admiral Nurses, through which dementia specialist nurses go to patients’ homes. Such an initiative could reduce the costs of care for families and could also be implemented in marginalized areas where there is often a severe lack of attention in this regard.
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