Friday, Sep 29, 2023

‘Our country is getting old’: the man changing how Brazil sees dementia

‘Our country is getting old’: the man changing how Brazil sees dementia

When his grandmother was diagnosed, Fernando Peres realised how ill prepared countries like Brazil are for treating dementia

It took one year and countless visits to various doctors in Porto Alegre, in southern Brazil, for Fernando Peres to find out what was behind his grandmother’s strange behaviour.

After undergoing clinical tests, Peres’s grandmother, Nilva Aguzzoli, 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 disease before standing up and bidding them farewell.

“I wanted him to explain what was happening. But the appointment was over and we had to go back home,” remembers Peres. “I thought Alzheimer’s was what Dory, the blue fish in Finding Nemo, had. I thought my grandma was going to say: ‘Hello, my name is Nilva, hello my name is Nilva’ many times a day.”

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

Peres ignored his grandmother’s diagnosis until two years later when he realised she had briefly forgotten who he was. Aguzzoli and her family had been left by the public health system to fend for themselves. They were not referred to any organisations or given additional support.

According to Dr Alexandre Kalache, president of the International Longevity Centre – Brazil, this is standard practice in the country. “Infrequently will anyone get follow-up care if diagnosed with Alzheimer’s … We lack a national policy. Only one out of four countries has a proper national plan to deal with dementia. This is a big problem.”

Alzheimer’s and dementia more widely remain stigmatised and misunderstood, even among healthcare professionals, adds Kalache. This does not bode well for a growing population of older people in Brazil. There are 33 million people over the age of 60 in the country, he says0; in less than 30 years, there will be 67 million.

Fernando Peres with a book he wrote for children about his grandmother, Nilva Aguzzoli, who developed Alzheimer’s disease before dying in 2013, Porto Alegre, in southern Brazil

Estimates put the number of people with dementia in Brazil at up to 1.5 million. “Developing countries are getting old in a shorter period of time without resources and with poverty,” adds Kalache.

Driven by a lack of understanding around Alzheimer’s and an immense love for his grandmother, Peres has dedicated his life to raising awareness of the condition. At first, he created a Facebook page that tracked what he and his family experienced on his grandmother’s journey with Alzheimer’s.

Peres wrote about conversations and situations between him and his grandmother, and also gave tips for how to manage certain behaviours and situations. He wrote about their interactions with humour and the page grew to have about 150,000 followers.

Part of the reason for doing it was to show how you could lead a fulfilling life with Alzheimer’s. He says: “There were weird moments when all of a sudden my grandma would scream at me in the street, calling for the police and help. Yes, those weird moments happen but that doesn’t mean you won’t live good moments as well.”

There was one experience that he will never forget. His grandmother had always wanted to visit Iguaçu Falls but was too scared to get on a plane before she was diagnosed with Alzheimer’s. One day he asked whether she would consider flying and she replied yes. “She had changed with Alzheimer’s,” says Peres. “I said to my mum, ‘this is our chance, let’s take her.’ We went. It was a hell of a journey. She got there and was crying. It was her dream and she was amazed at the view.”

Fernando Peres with his grandmother, Nilva Aguzzoli, and his mother.

Back at the hotel, she forgot what had happened and people questioned whether 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 been writing together about their journey together with Alzheimer’s. It sold more than 300,000 copies and Peres has gone on to write four other books about the condition, some aimed at children.

Today, he is heavily involved with the International Longevity Centre – Brazil, as well as a patient organisation; 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 Vovó Nilva, which promotes innovation in dementia.

As part of its work, he, along with two others, is planning to gather people with dementia and their carers as well as researchers, advocates and health professionals to walk 50 miles of the Camino de Santiago, a pilgrimage in northern Spain, over four days next year. The aim is to draw attention to the importance of developing friendlier societies for families facing 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, you can’t do anything any more. We’re doing the opposite.”


Related Articles

Paper straws found to contain long-lasting and potentially toxic chemicals - study
FTX's Bankman-Fried headed for jail after judge revokes bail
Blackrock gets half a trillion dollar deal to rebuild Ukraine
Israel: Unprecedented Civil Disobedience Looms as IDF Reservists Protest Judiciary Reform
America's First New Nuclear Reactor in Nearly Seven Years Begins Operations
Southeast Asia moves closer to economic unity with new regional payments system
Today Hunter Biden’s best friend and business associate, Devon Archer, testified that Joe Biden met in Georgetown with Russian Moscow Mayor's Wife Yelena Baturina who later paid Hunter Biden $3.5 million in so called “consulting fees”
Singapore Carries Out First Execution of a Woman in Two Decades Amid Capital Punishment Debate
Google testing journalism AI. We are doing it already 2 years, and without Google biased propoganda and manipulated censorship
Unlike illegal imigrants coming by boats - US Citizens Will Need Visa To Travel To Europe in 2024
Musk announces Twitter name and logo change to
The politician and the journalist lost control and started fighting on live broadcast.
The future of sports
Unveiling the Black Hole: The Mysterious Fate of EU's Aid to Ukraine
Farewell to a Music Titan: Tony Bennett, Renowned Jazz and Pop Vocalist, Passes Away at 96
Alarming Behavior Among Florida's Sharks Raises Concerns Over Possible Cocaine Exposure
Transgender Exclusion in Miss Italy Stirs Controversy Amidst Changing Global Beauty Pageant Landscape
Joe Biden admitted, in his own words, that he delivered what he promised in exchange for the $10 million bribe he received from the Ukraine Oil Company.
Swedish Embassy in Baghdad Engulfed in Flames Amidst a Firestorm of Protests
TikTok Takes On Spotify And Apple, Launches Own Music Service
Global Trend: Using Anti-Fake News Laws as Censorship Tools - A Deep Dive into Tunisia's Scenario
Arresting Putin During South African Visit Would Equate to War Declaration, Asserts President Ramaphosa
Hacktivist Collective Anonymous Launches 'Project Disclosure' to Unearth Information on UFOs and ETIs
Typo sends millions of US military emails to Russian ally Mali
Server Arrested For Theft After Refusing To Pay A Table's $100 Restaurant Bill When They Dined & Dashed
The Changing Face of Europe: How Mass Migration is Reshaping the Political Landscape
China Urges EU to Clarify Strategic Partnership Amid Trade Tensions
Europe is boiling: Extreme Weather Conditions Prevail Across the Continent
The Last Pour: Anchor Brewing, America's Pioneer Craft Brewer, Closes After 127 Years
Democracy not: EU's Digital Commissioner Considers Shutting Down Social Media Platforms Amid Social Unrest
Sarah Silverman and Renowned Authors Lodge Copyright Infringement Case Against OpenAI and Meta
Why Do Tech Executives Support Kennedy Jr.?
The New York Times Announces Closure of its Sports Section in Favor of The Athletic
BBC Anchor Huw Edwards Hospitalized Amid Child Sex Abuse Allegations, Family Confirms
Florida Attorney General requests Meta CEO's testimony on company's platforms' alleged facilitation of illicit activities
The Distorted Mirror of actual approval ratings: Examining the True Threat to Democracy Beyond the Persona of Putin
40,000 child slaves in Congo are forced to work in cobalt mines so we can drive electric cars.
A Swift Disappointment: Why Is Taylor Swift Bypassing Canada on Her Global Tour?
Historic Moment: Edgars Rinkevics, EU's First Openly Gay Head of State, Takes Office as Latvia's President
An Ominous Shift in Warfare: Western Powers Risk War Crimes and Violate International Norms with Cluster Bomb Supply to Ukraine
Bye bye democracy, human rights, freedom: French Cops Can Now Secretly Activate Phone Cameras, Microphones And GPS To Spy On Citizens
The Poor Man With Money, Mark Zuckerberg, Unveils Twitter Replica with Heavy-Handed Censorship: A New Low in Innovation?
Unilever Plummets in a $2.5 Billion Free Fall, to begin with: A Reckoning for Misuse of Corporate Power Against National Interest
Beyond the Blame Game: The Need for Nuanced Perspectives on America's Complex Reality
Twitter Targets Meta: A Tangle of Trade Secrets and Copycat Culture
The Double-Edged Sword of AI: AI is linked to layoffs in industry that created it
US Sanctions on China's Chip Industry Backfire, Prompting Self-Inflicted Blowback
Meta Copy Twitter with New App, Threads
The New French Revolution
BlackRock Bitcoin ETF Application Refiled, Naming Coinbase as ‘Surveillance-Sharing’ Partner