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Connecticut researcher writes children's book that debunks misconceptions about dementia

Board Member, Eilon Caspi, speaks with CT Insider about his latest book on memory loss through the eyes of a child

Jordan Nathaniel Fenster, Staff writer View article here

In a newly released book for children, a University of Connecticut researcher debunks one by one the common misconceptions about dementia, offering alternative outlooks that are each backed by scientific research.

“What I've Learned About Grandma's Memory” features a 10-year-old Black girl who decides to visit her grandmother once a week for an entire summer. She learns over the course of her visits that what she’s been told about her grandmother’s Alzheimer's disease is incorrect.

“She's been told that there's no point of visiting her because her grandmother ‘is no longer there,’” said author Eilon Caspi, a gerontologist and assistant research professor at UConn's Institute for Collaboration in Health, Intervention, and Policy.

The two go for a walk to a nearby lake, they tend to a garden, they dance, and with each interaction the main character learns that what she’s been told about her grandmother’s dementia is not true.

“‘I've been told that she won’t remember that I visited her but what I found from the staff members is that the positive emotions from our visit will remain with her for quite some time after I leave,’” Caspi read from the book in the young girl's voice. “Or, ‘I've been told that she won't remember the names of the people in our family, but when I showed her an old picture album I can tell that she recognizes some of them.’”

“That's how the brain works in Alzheimer's disease,” Caspi said. “The book attempts to balance the predominant narrative that it's all just doom and gloom and devastating.”

Caspi said there is a common narrative that “writes off” people with dementia as already gone, unable to communicate, “the living dead,” whereas the truth is more complicated.

“A lot of people with dementia when they're well supported and when their family members have education and guidance about how to approach, how to communicate, how to understand the emotional needs, you can actually enable them to have good emotional well being and psychological well being,” he said.

Each scenario presented in Caspi’s book — which he self-published along with illustrator Michelle Ignatowicz and book designer Kate Goebel — is based on existing research into the cognitive abilities of dementia patients, as well as Caspi’s own personal and professional experience.

“There's research on therapeutic gardening. There's research on what is called assisted pet therapy. There's research on dance therapy, there's research on massage therapy, there's research on being in nature with people with dementia,” Caspi said. “Music can do miracles with people living with dementia when it's personally tailored, not just random music, something they love listening to in their early life and their young adulthood.”

The protagonist is a young Black girl because Caspi found that most books for children on the subject were tailored to white families, even though rates of Alzheimer’s are far higher among Black patients.

“There's a need for this population to be represented in children's books, so those kids also need to have something inspiring, perhaps some guidance about what can be done, not just about the losses of grandma and grandpa,” he said. “Recent studies have shown that they receive a lower quality of care compared to whites, and African Americans have roughly, according to one estimation, twice the rate of Alzheimer's disease compared to whites. Twice.”

Caspi is focusing on getting his book into nursing homes and assisted living facilities, in the hopes of encouraging more visits from family members. He’s hoping older children will read it with their younger siblings, parents will read it to their children, and all “becoming more educated about the disease.”

“Kids see things that we don't see. They have this creative mind,” he said. “They haven't yet internalized the stigma and the misconceptions about this population.”

The book ends with the protagonist learning that her grandmother is still present, even though she may have to change how they relate to one another.

“‘The most important thing I learned about grandma's memory is that I simply need to forget a lot of what I've been told about Alzheimer's and I've learned that grandma is always there,’” Caspi read. “That is, if I make the time to be with her.”

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