Sowing Empathy: A Rose for Grandma
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How a children’s book sprouts understanding of Alzheimer’s disease.
When a loved one is diagnosed with dementia, it can be hard to explain to anyone. But it can feel impossible explaining to a child why grandma might forget her favourite hobby or even her name.
Children’s author Christiana Egi hopes to jumpstart these conversations with her book A Rose for Grandma, which gracefully portrays a child’s ability to understand, accept and adapt while highlighting the creative and caring nature of children.
But for Egi the book has deeper purpose — to sow empathy and eradicate stigma, and to ultimately improve the lives of people living with dementia and their families.
Planting the seed
Over two decades ago, Egi co-founded Toronto’s Alexis Lodge retirement home for people living with dementia with her late husband, Anthony.
She recalls that the most painful experiences she witnessed in her work were the strained family relationships caused by behavioural changes associated with dementia.
“I’d have to explain that it wasn’t their loved one acting this way, it was the disease,” she says, adding that much of this stigma comes from misunderstanding or not knowing what to expect from dementia’s progression.
When her husband died a few years ago, Egi wanted to find a way to honour his legacy. This combined with witnessing how difficult it is to explain dementia to family, she came up with an interesting way to break down stigma and educate as early as possible — through writing children’s books about the topic.
“We tend to overlook that [children] see and feel and get scared,” Egi says. “We need to explain that grandma is going through something … and on days she is okay, they can enjoy her and help her along.”
Thus, A Rose for Grandma bloomed:
Annie loves spending time with her grandparents; they're some of her favorite people. One day she notices Grandma acting a bit strangely, and Annie learns that her warm, creative, loving grandma has Alzheimer's Disease. Although at first Annie is worried, as she learns more about dementia, she makes up her mind to help Grandma in any way she can.
– A Rose for Grandma cover summary
Though it is a children’s book with vibrant illustrations (by Ramneet Kaur), Egi hopes it can be used as a tool for adults to better understand dementia as well.
“Each time an adult picks up that book, they will learn along too,” she says. “The more people who know about the disease and its process, the easier it will be for families that will go through it or for individuals to be more accepting.”
Egi says all the work she is doing, whether running Alexis Lodge or writing books to further education, is to help improve the lives of people living with dementia, stressing the importance that life does not end with a dementia diagnosis.
“There can still be memories intact and abilities that you can enhance,” she says. “The things you can learn from [people living with dementia], the discussions and conversations you can have, are just amazing. I’m trying to help people tap into that.”
Nurturing the future
Egi has already written two more dementia-focused children’s books that are ready to be published — one about a journey through vascular dementia and another about mixed dementias. And she has an idea in mind for her fourth.
In the meantime, she’ll continue to hope A Rose for Grandma helps to plant seeds of empathy in both children and adults and shears away stigma associated with dementia.
“Getting people to talk and getting children to learn from a very early age is important,” she says. “I hope this book is a conversation starter.”
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