2 Sisters Write Alzheimer’s Book for Kids to Honor Their Grandmother

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Alzheimer's book | Alzheimer's News Today | Photo of Kiki Kouris and Tanya Iovino

Kiki Kouris (left) and Tanya Iovino attend a 2018 Alzheimer's Association Event. (Photos courtesy of Tanya Iovino)

To honor their grandmother who died from Alzheimer’s in 2011, two sisters have written a children’s book to explain to kids what the disease is and how it affects those who have it.

Tanya Iovino and Kiki Kouris wrote “A Kids Book About Alzheimer’s” to provide support and information to people who have a family member with the disease.

The book, published by A Kids Company About, is expected to be released in February and is currently available for preorder. A Kids Company About specializes in short books, podcasts, and classes that teach children about topics such as climate change, disability, technology, and gender.

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“I want people to know that Alzheimer’s is not something that you should be scared of, and it’s not isolating, even though it is isolating when you’re going through it,” said Iovino, 36, in a joint video interview with her sister. “I want them to feel like they’re not alone and that there is hope.”

Kiki Kouris (left) and Tanya Iovino wrote a children’s book in memory of their grandmother, Kiki Kotsiviras, who had Alzheimer’s.

It was a shock for the two sisters from Chicago when their grandmother, Kiki Kotsiviras, started developing symptoms of Alzheimer’s and thinking that her husband, Peter Kotsiviras, was gone and the man she was with wasn’t the one she married.

Before then, the couple was clearly in love even in old age, the sisters said. They would do everything together, even going so far as to compare their relationship to the one in “The Notebook,” which, incidentally, features a main character who develops Alzheimer’s.

This new false belief Kotsiviras had about her husband, known as Capgras syndrome, was difficult for the family to understand.

“It was heartbreaking for her because she didn’t know he was there, and it was heartbreaking for him because he was, and he saw that she was suffering looking for him,” Kouris said.

As Iovino said, the diagnosis was isolating for them. It came 10 years ago when the public knew less about the disease and information was sparse. The stigma was even worse then, she added. They were afraid to tell their extended, self-described loud-mouth Greek family about Kotsiviras’ condition.

“We were kind of isolated on this island trying to figure out how to move forward with her being sick,” Iovino said.

Part of the hope with the book is to help others through that same feeling and direct them toward resources that could help them on their journey, such as the Alzheimer Association’s 24/7 helpline, which offers free services and support for anyone affected by dementia. The back of the book includes links to the Alzheimer’s Association, Women’s Alzheimer’s Movement, Hilarity for Charity, and the National Institute on Aging.

Iovino works as a project manager and Kouris has a job in human resources, so the two had no prior experience in writing a book. But, they said, that wasn’t a problem because A Kids Company About provided an outline and they had plenty of personal experience to draw from.

“We basically just used the experiences that we had and told it in a way that we want kids to feel comfortable about the situation and know that it’s okay to be scared and sad,” said Kouris, 33. “If it helps just one person, then we did our job.”

For a long time after their grandmother’s diagnosis and death one year later at age 75, the sisters couldn’t say the word “Alzheimer’s” without breaking down in tears. The caring matriarch was completely changed and taken away from them before they had a chance to process what had happened.

So, when nearly seven months after their grandmother’s death, Iovino, then 26, asked Kouris, then 23, about joining the newly formed Alzheimer’s Association Illinois Chapter Junior Board, her first answer was “Hell, no.”

Kouris eventually gave in, and the two served as board members for the group for eight years. Looking back, she said it was one of the best decisions she could have made.

“It was so therapeutic to be able to meet kids that were our age … who kind of had a similar situation,” Kouris said.

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The sisters felt they had made their mark on the organization and stepped down last year to allow others — who are now where the sisters were nearly 10 years ago — to take on the fundraising, advocacy, and awareness side of the Junior Board on their own.

Then, it was trying to figure out the next thing they wanted to do for the Alzheimer’s community. The sisters believe everything happens for a reason, like, for example, the time their grandmother needed full-time care right when Kouris graduated college and had free time to assist her.

They said the same thing happened when it came to writing “A Kids Book About Alzheimer’s.” It came at a time when they were at a crossroads. Iovino reached out to the company behind the series, and the people there instantly fell in love with their story and book idea.

“I thought to myself, they don’t have a kids book about Alzheimer’s,” Iovino said. “And I know two experts who know everything there is to know about our family’s story. … The rest is history.”