Fernando Peres needed a year and countless visits to several doctors in Porto Alegre, southern Brazil, to find out what was behind his grandmother’s strange behavior.
After undergoing clinical trials, Peres’ grandmother, Nilva Aguzzoli, then 73, went to a medical appointment with her grandson to get the results. Two minutes before the end of the 15-minute appointment, the doctor announced that her grandmother had Alzheimer’s before she got up and said goodbye to them.
Quick guide
A common condition
Show
The human number of noncommunicable diseases (NCDs) is huge and increasing. These diseases end the lives of approximately 41 million of the 56 million people who die each year, and three-quarters of them are in the developing world.
MNTs are just that; unlike, say, a virus, you can’t catch them. Instead, they are caused by a combination of genetic, physiological, environmental, and behavioral factors. The main types are cancers, chronic respiratory diseases, diabetes and cardiovascular diseases: heart attacks and strokes. Approximately 80% can be prevented, and all are on the rise, spreading inexorably around the world as the aging population and lifestyles driven by economic growth and urbanization make it unhealthy to be a global phenomenon.
NCDs, once considered the disease of the rich, now have control over the poor. Illness, disability, and death are perfectly designed to create and expand inequality, and being poor makes you less likely to be accurately diagnosed or treated.
The investment to deal with these common and chronic conditions that kill 71% of us is incredibly low, while the cost to families, economies and communities is surprisingly high.
In low-income countries, non-communicable diseases (usually slow and debilitating illnesses) are being invested or given a fraction of the money needed. Attention continues to be focused on the threat of communicable diseases, but cancer mortality rates have long exceeded the number of deaths from malaria, tuberculosis and HIV / AIDS combined.
‘A common condition’ is a new Guardian series that reports on NCDs in the developing world: their prevalence, solutions, causes and consequences, telling the stories of people living with these diseases.
Tracy McVeigh, editor
Thanks for your feedback.
“I wanted him to tell me what was going on. But the date was over and we had to go home,” Peres recalls. I thought my grandmother was going to say, ‘Hello, my name is Nilva, hello, my name is Nilva’ many times a day. “
Developing countries are aging in a shorter period of time without resources and with poverty Alexander Kalache
Peres returned home, diagnosed with Alzheimer’s, and was hit by a downpour of information about all the negative aspects of a brain disorder that slowly destroys memory and thinking skills, and eventually the ability to carry. perform the simplest tasks.
Peres ignored his grandmother’s diagnosis until two years later he realized that she had briefly forgotten who he was. Aguzzoli and his family had been left by the public health system to go out on their own. No organization was referred to them or given additional support.
According to Dr. Alexandre Kalache, president of the International Center for Longevity in Brazil, this is a common practice in the country. “Rarely will anyone get follow-up care if they are diagnosed with Alzheimer’s … We lack a national policy. Only one in four countries has a proper national plan to deal with dementia. That’s a big problem.”
Fernando Peres with a book he wrote for children about his grandmother, Nilva Aguzzoli, who developed Alzheimer’s disease before she died in 2013, Porto Alegre, southern Brazil Photo: courtesy of Vovó Nilva
Alzheimer’s and dementia remain stigmatized and misunderstood, even among health professionals, Kalache adds. This is not a good omen for a growing elderly population in Brazil. There are 33 million people over the age of 60 in the country, he says; in less than 30 years, there will be 67 million.
Estimates put the number of people with dementia in Brazil at 1.5 million. “Developing countries are aging in a shorter period of time without resources and with poverty,” Kalache adds.
Driven by a misunderstanding around Alzheimer’s and an immense love for his grandmother, Peres has dedicated his life to raising awareness of the disease. At first, he created a Facebook page that kept track of what he and his family experienced during their grandmother’s Alzheimer’s trip.
Peres wrote about conversations and situations between himself and his grandmother, and also gave advice on how to handle certain behaviors and situations. He wrote about his interactions with humor and the page grew to about 150,000 followers.
Part of the reason for doing so was to show how one could lead a full life with Alzheimer’s. He says: “There were strange times when my grandmother suddenly called me on the street, asking for the police and help. Yeah Al that sounds pretty crap to me, Looks like BT aint for me either.
There was an experience you will never forget. Her grandmother had always wanted to visit the Iguacu Falls, but she was too scared to get on a plane before she was diagnosed with Alzheimer’s. One day he asked her if she would think of flying and she said yes. “It had changed with Alzheimer’s,” says Peres. “I said to my mother, ‘This is our chance, let’s take it.’
Fernando Peres with his grandmother, Nilva Aguzzoli. Photo: courtesy of Vovo Nilva
Back at the hotel, he forgot what had happened and people wondered if it was worth it. But, as Peres says: “I saw her excited when she was there. It’s not about memories, it’s about emotion. “
After Aguzzoli’s death in 2013, Peres decided to publish a book they had been writing together about their journey along with Alzheimer’s. It has sold over 300,000 copies and Peres has gone on to write four more books on the condition, some aimed at children.
He is currently very involved with the International Center for Longevity – Brazil, as well as with a patient organization; is a member of the World Young Leaders in Dementia and also the director of an institute named after his grandmother, Instituto Vovó Nilva, which promotes innovation in dementia.
As part of his work, he, along with two others, plans to gather people with dementia and their caregivers, as well as researchers, advocates and health professionals to walk 50 miles of the Way of St. James, a pilgrimage north of Spain, over the course of four days next year. The goal is to draw attention to the importance of developing more friendly societies for families facing dementia. A documentary on the project is being worked on.
“It’s a project to empower people with dementia and their families,” he says. “After getting a label, people will say that you can’t travel, that you can’t travel, that you can’t do anything anymore. We are doing the opposite. “