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“Who, me?” – A grandmother. A grandson. A life lesson. A series of books and projects to address aging, dementia and the cross-generational connection

After becoming the primary caregiver for his grandmother, Vovó Nilva, diagnosed with Alzheimer’s, Fernando became interested in dementias due to the lack of informative content, public awareness and positive narratives that could achieve the general public.

The young journalist released his first book in Brazil at the age of 22, and since then he has written about Alzheimer’s and aging for adults and children in three countries, accumulating about 400,000 copies sold of his 5 released pieces. The books are a tribute to the experience lived with his grandmother, collecting lessons learned from the past six years living with Alzheimer’s in Porto Alegre, Brazil, and expanding this knowledge to the population clearly and filled with human truths.

Fernando was only 16 when his best friend was diagnosed with Alzheimer’s disease. She was his grandmother and adventure buddy. The consultation that delivered the diagnosis was sharp and cold, lasting about 15 minutes. After that, Google made sure to cover Alzheimer’s in a purely negative and stigmatized way, making the young lad think that he would never be able to take care of the person who had always taken care of him.

https://www.youtube.com/channel/UCBKvWjROGWIuyc7YDQyq-5A

It was this lack of positive content and multiple narratives that encouraged Fernando to create a fanpage on a social network named after his grandmother, where he would share all the daily stories that made that adventure together something so special.

Everyone around him said that drug treatment was the only way out, but Fernando knew that this was not enough, and that even today dementias force families to accept a diagnosis that is incurable and insidious, but which allows us to learn lessons never before imagined.

To share these learnings and help other families in the same process, Fernando published his first book in 2014 (“Quem, eu?” Companhia das Letras Publishing House), where he tells his adventure after dropping philosophy school and his job to take care of his grandmother. After that, he published a book about Alzheimer’s aimed at children (“Grandpa is a Superhero” Saber & Ler / Quipu Publishing House), a beautiful artwork illustrated by the Argentinian Juan Chavetta, and released in Brazil and Latin American countries. The publication was chosen by a federal program and distributed to more than 150 thousand children in public schools throughout Brazil.

Fernando also wrote two other children’s titles (“Donde esta la Abuela?” e “La Aventura de Hipo” Quipu Publishing House) and a work aimed at caregivers and health professionals (“Alzheimer is not the end” Belas Letras Publishing House).

The motivation to continue writing, presenting interview shows and podcasts, giving lectures and developing projects focused on the dementia ecosystem remains the same: to offer more comfort to families living the same as his grandmother.

The books address numerous everyday strategies related to improving communication, reducing behavioural changes and improving quality of life from non pharmacological, but extremely creative interventions.

It is impossible to accept a diagnosis that is not understood, not to mention discussed. Fernando put the issue on the table and was called by a columnist from the newspaper Folha de São Paulo as “a voice for Alzheimer’s”.

Fernando has managed to partner with different companies to distribute around 170,000 copies of his books free of charge to families living with Alzheimer’s. The books are also available in bookshops and libraries. The writer has set up a company, Instituto Vovó Nilva, which hosts these and other creative projects in partnership with organizations in numerous countries.

Links to articles:

“Quem, eu?”

“Donde Esta la Abuela?”

“Vovô é um Super-herói”

“La Aventura de Hipo”

“Alzheimer não é o fim”

The Guardian

For further Information:

Fernando Aguzzoli-Peres – Journalist, bestselling author and a Global Atlantic Fellow for Equity in Brain Health pelo Global Brain Health Institute, Trinity College Dublin.

Fernando(dot)peres(at)gbhi(dot)org