‘Our country is getting old’: the man who is changing Brazil’s view of dementia

It took a year and countless visits to different doctors in Porto Alegre, in the south of Brazilfor Fernando Peres to find out what was behind his grandmother’s strange behavior.

After undergoing clinical testing, Peres’ grandmother, Nilva Aguzzoli, then 73, went to 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 disease before standing up and saying goodbye to them.

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A common condition

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The human toll of non-communicable diseases (NCDs) is enormous and rising. These diseases end the lives of about 41 million of the 56 million people who die each year – and three quarters of them are in developing countries.

NCDs are just that; unlike, say, a virus, you cannot 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. About 80% are preventable, and they are all increasing and spreading inexorably around the world as aging populations and lifestyles, driven by economic growth and urbanization, make unhealthy health a global phenomenon.

NCDs, once seen as diseases of the rich, now have a hold on the poor. Illness, disability and death are perfectly designed to create and increase inequality – and being poor means you are less likely to receive an accurate diagnosis or treatment.

Investments in addressing these common and chronic conditions that kill 71% of us are incredibly low, while the costs to families, economies and communities are staggeringly high.

In low-income countries, NCDs – typically slow and debilitating diseases – see a fraction of the money needed invested or donated. The focus remains on the threats of communicable diseases, but cancer death rates have long surpassed the combined death toll from malaria, tuberculosis and HIV/AIDS.

‘A Common Condition’ is a new Guardian series that reports on NCDs in the developing world: their prevalence, the solutions, the causes and consequences, and tell the stories of people living with these diseases.

Tracy McVeigh, editor

“I wanted him to explain what was going on. But the deal was over and we had to go home,” recalls Peres. “I thought Alzheimer’s was what” Dory, the blue fish in Finding Nemo, had. I thought my grandmother would say many times a day, ‘Hello, my name is Nilva, hello my name is Nilva’.’

Returning home, Peres searched for Alzheimer’s disease and was struck by a barrage of information about all the negative aspects of a brain disorder that slowly destroys the memory and thinking skills and eventually the ability to perform the simplest tasks.

Peres ignored his grandmother’s diagnosis until two years later he realized she had forgotten who he was for a moment. Aguzzoli and her family were left to their own devices by the public health system. They were not referred to organizations or given any additional support.

According to Dr. Alexandre Kalache, President of the International Longevity Center – Brazil, this is standard practice in the country. “It is rare for someone to receive aftercare if they are diagnosed with Alzheimer’s… We do not have a national policy. Only one in four countries has a good national plan to tackle dementia. This is a big problem.”

Alzheimer’s and dementia remain more widely stigmatized and misunderstood, even among health care professionals, Kalache adds. This does not bode well for a growing population of the elderly 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 getting old in less time with no resources and with poverty,” Kalache added.

Driven by a lack of understanding around Alzheimer’s disease and an immense love for his grandmother, Peres has devoted his life to raising awareness of the condition. Initially, he created a Facebook page that kept track of what he and his family experienced during his grandmother’s journey with Alzheimer’s disease.

Peres wrote about conversations and situations between him and his grandmother, as well as giving tips for coping with certain behaviors and situations. He wrote about their interactions with humor and the page grew to about 150,000 followers.

Part of the reason for doing it was to show how to live a fulfilling life with Alzheimer’s disease. He says: “There were strange moments when my grandmother suddenly yelled at me in the street and called the police and help. Yes, those weird moments happen, but that doesn’t mean you won’t have good moments too.”

There was one experience he will never forget. His grandmother had always wanted to visit Iguaçu Falls, but was too afraid to get on a plane before she was diagnosed with Alzheimer’s. One day he asked if she would consider flying and she answered yes. “She was changed by Alzheimer’s disease,” Peres says. “I said to my mother, ‘this is our chance, let’s get her.’ We went. It was a hellish journey. She got there and cried. It was her dream and she was amazed by the view.”

Back at the hotel she forgot what had happened and people wondered if it had been worth it. But, as Peres says, “I saw her excitement when she was there. It’s not about the memories, it’s about the emotion.”

After Aguzzoli’s death in 2013, Peres decided to publish a book they had written together about their journey along with Alzheimer’s disease. More than 300,000 copies have been sold and Peres has gone on to write four other books on the condition, some aimed at children.

Today he is closely involved with the International Longevity Center – Brazil, as well as with a patient organization; he is a member of the World young leaders in dementia and also the director of an institute that bears his grandmother’s name, Instituto Vovo Nilvacpromoting innovation in dementia.

As part of his work, he, along with two others, plans to bring together people with dementia and their carers, as well as researchers, lawyers and health professionals to walk 50 miles of the Camino de Santiago, a pilgrimage in northern Spain, more than four days next year. The aim is to draw attention to the importance of developing friendlier societies for families with dementia. A documentary about the project is in the works.

“It’s a project to empower people with dementia and their families,” he says. “After getting a label, people will say you can’t travel, you can’t walk the Camino, there’s nothing more you can do. We do the opposite.”