Here is a list of recommended books on teaching children about Alzheimer’s from the NY Times blog on Aging.
I stopped at a children’s bookshop in Manhattan last week and asked to see books on Alzheimer’s disease. The store stocked at least half a dozen, with titles like “What’s Wrong with Grandma?” and “What’s Happening to Grandpa?”
That was only a small sample. Three doctoral students at Washington University, analyzing the way storybooks describe the disease, found 33 of them published for 4- to 12-year-olds from 1988 to 2009.
It’s a growing market, since the number of people with Alzheimer’s keeps rising along with the number of older Americans. I wonder, given that most of those people are in their 70s and 80s, whether storybook readers are likely to be not grandchildren but great-grandchildren.
Nonetheless, “storybooks about a difficult disease like Alzheimer’s can be a gentle way to introduce it to young children,” said Erin Y. Sakai, lead author of the study, which was just published in the American Journal of Alzheimer’s Disease and Other Dementias. “It’s a recognized technique.” Not only can books give children insight, she added, but also, “they can also guide parents with their discussions.”
Ms. Sakai and her co-authors were disappointed, however, by many of the 33 books they examined. “There are areas that are important to address that some books aren’t capturing,” she told me in an interview.
Like, for example? “The books did a generally good job of portraying the cognitive aspects — memory problems, poor judgment,” Ms. Sakai said. “But other elements were less well-represented.”
They include symptoms like wandering, agitation, sleep disturbances and depression. Only about a third of the books depicted anger or irritability, and very few showed functional limitations — the inability to drive, feed oneself, walk.
The researchers, arguing for more comprehensive portraits, noted that only a quarter of the books discussed the diagnostic process, and only 12 percent reassured kids that Alzheimer’s wasn’t catching and that they wouldn’t come down with it. Acknowledgments that people with the disease will get worse were rare, and references to incurability and eventual death even rarer.
Moreover, few authors pointed out the difference between dementia and normal aging. “I think that’s an important distinction, in terms of reducing stereotypes about aging in general,” Ms. Saka saidi.
Who could disagree? But some books that hit most of those marks — like Maria Shriver’s “What’s Happening to Grandpa?” — struck me as so earnestly well-intended and so lifeless that I couldn’t imagine reading it the requisite 30 times in a row to a 6-year-old.
Ms. Sakai declined to offer opinions on specific titles, so I called my highly opinionated friend Marjorie Ingall, a Tablet columnist who reviews children’s books for The New York Times. “The kid’s not going to want to hear it 30 times,” she pointed out. “The kid will run from the room.”
We both sympathized, as authors ourselves, with the difficulties of trying to convey information about a terrible disease while simultaneously telling an absorbing story, all without inducing nightmares. But, Ms. Ingall insisted, “Picture books are not school. Picture books are not medicine. You can be a very little kid and understand good literature.”
The book we both liked — I felt so validated — was “The Memory Box,” published 20 years ago by a small Illinois press, written by Mary Bahr and beautifully illustrated by David Cunningham. I imagine the Washington University team would find it insufficiently comprehensive — it doesn’t mention diagnostics or communicability, and uses the term “Alzheimer’s disease” precisely once — but it’s a lovely tale of a boy already feeling the loss of his grandfather.
“It works as a story,” Ms. Ingall said. “I believe in the concept of bibliotherapy. Reading about stuff can enrich your life. But you have to start with, ‘Is this book successful as a book?’”
I don’t imagine children’s authors will resolve this tension between comprehensiveness and literary merit any time soon, but meanwhile, I thought I’d pass along a couple of Ms. Ingall’s other picks for parents and grandparents hoping to introduce children to a subject we would all rather not face.
She likes “Still My Grandma,” by Veronique Van Den Abeele, with illustrations by Claude K. Dubois, because “it’s got lot of kid appeal.”
And for older readers past the picturebook stage, she gives props to Gordon Korman’s “Pop,” the rare book in which a character has early-onset Alzheimer’s. And to Jordan Sonnenblick’s “Curveball: The Year I Lost My Grip,” because “it’s fabulous.”
Your picks are invited, too, in the comments box below.
Paula Span is the author of “When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions.”