It took one year and countless visits to several doctors in Porto Alegre, southern Brazil, for Fernando Perez to discover the cause of his grandmother’s strange behavior.
After undergoing clinical examinations, Perez’s grandmother Nelva Aguzoli, 73 at the time, attended a doctor’s appointment with her grandson to get the results. Two minutes before the end of the 15-minute appointment, the doctor announced that his grandmother had Alzheimer’s before standing up and saying goodbye.
“I wanted him to explain what was happening. But the date was over and we had to go home,” Perez recalls. “I thought Alzheimer’s was what Dory, the blue fish in Finding Nemo, had. I thought my grandmother would say, ‘Hi, my name is Nelva, hello my name is Nelva’ several times a day.”
Pires returns home, researching Alzheimer’s disease, and is struck by a torrent of information about all the negative aspects of a brain disorder that slowly destroys memory and thinking skills and, eventually, the ability to perform the simplest tasks.
Perez ignored his grandmother’s diagnosis until two years later when he realized she had briefly forgotten who he was. The public health system has left Aguzoli and her family to fend for themselves. They were not referred to any organizations or provided additional support.
According to Dr. Alexandre Kalachi, President of the International Center for Longevity – Brazil, This is a standard practice in the country. “Rarely does anyone get follow-up care if they are diagnosed with Alzheimer’s disease…We lack a national policy. Only one in four countries has a proper national plan for dealing with dementia. And that’s a huge problem.”
Kalach adds that Alzheimer’s disease and dementia remain widely stigmatized and misunderstood, even among healthcare professionals. This does not bode well for the growing number of elderly people in Brazil. He says there are 33 million people over the age of 60 in the country. In less than 30 years, there will be 67 million.
It is estimated that the number of people with dementia in Brazil reaches 1.5 million. “The developing countries are aging in a shorter period of time without resources and with poverty,” Kalach adds.
Driven by a lack of understanding about Alzheimer’s disease and an intense love for his grandmother, Peres devoted his life to raising awareness of the condition. Initially, he created a Facebook page that tracked what he and his family had experienced on his grandmother’s journey with Alzheimer’s disease.
Peres wrote about the conversations and situations between him and his grandmother, and also gave advice on how to manage certain behaviors and situations. He wrote about their interaction with the humor and the page grew to have around 150,000 followers.
Part of the reason for doing this was to show how you can live a fulfilling life with Alzheimer’s disease. He says, “There were strange moments when suddenly my grandmother yelled at me in the street, calling for the police and help. Yes, those strange moments happen but that doesn’t mean you won’t have good moments either.”
There was one experience he will never forget. His grandmother had always wanted to visit Iguazu Falls but was too afraid to board a plane before she was diagnosed with Alzheimer’s disease. One day he asked if she would consider air travel and she replied yes. “It changed with Alzheimer’s,” Perez says. “I told my mom, ‘This is our chance, let’s take it.'” We have gone. It was a journey from hell. She got there and was crying. It was her dream and she was amazed at the sight.”
Back at the hotel, I forgot what happened and people wondered if it was worth it. But as Perez says: “I saw her excitement when she was there. It’s not about the memories, it’s about the emotion.”
After Aguzoli’s death in 2013, Peres decided to publish a book they had written together about their journey with Alzheimer’s disease. It sold over 300,000 copies, and Perez went on to write four more books about the condition, some aimed at children.
Today, he is highly involved in the International Center for Longevity – Brazil, as well as an organization for patients; He is a member of the Global Young Leaders in Dementia and Director of the Institute named after his grandmother, Instituto Vovó Nilva, which promotes innovation in the field of dementia.
As part of her work, he and two others plan to gather people with dementia and their caregivers as well as researchers, advocates and health professionals to walk the 50 miles of Camino de Santiago, a pilgrimage in northern Spain, over four years. days next year. The aim is to draw attention to the importance of developing more friendly communities for families facing dementia. A documentary film about the project is in preparation.
“It’s a project to empower people with dementia and their families,” he says. “After you get a sticker, people will say you can’t travel, you can’t walk the Camino, you can’t do anything anymore. We’re doing the opposite.”