It seems the number of children’s books devoted to explaining Alzheimer’s Disease (AD) in a kid-friendly way is growing, not surprising since the number of people with Alzheimer’s continues to increase along with the number of older Americans. The New York Times recently reported that a trip to a local children’s book store stocked revealed at least half a dozen titles on the shelves. A more formal study by 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.
Among the books is one authored by Linda Scacco, a West Hartford mother of three, clinical psychologist and an adjunct professor at the University of Hartford, who drew on her professional and personal experience. Her book, "Always My Grandpa," was published in 2005. The roots of the story come from the death of Scacco’s uncle from the disease in 1988. Reviews of the book highlighted its “gentle narration and easy-to-understand explanations,” about Alzheimer's disease and “how it affects children, and families.”
While acknowledging the challenge of presenting explanations in a way that children can absorb, the Wash U graduate students found that overall, the books tend to “provide little information about the diagnostic process or treatments. Clinical presentations are diverse among characters with AD, and no single book presented a comprehensive depiction of the cognitive, behavioral, affective, and functional symptoms of the disease.” They suggest that more be done to “ensure health literacy about AD in young children.”
The Times pointed out that the study indicated that generally absent were “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.”