Book of Life

As the organization has grown, it has refined the nature of the mission first discovered by Sophie as she read to a room filled with sick, aging people. Young’s vision of that central goal is powerful: discovery. “We train kids to discover the person who's in there,” Young says, highlighting the fact that one of the most terrible aspects of Alzheimer’s is the seeming erasure of former personality. To combat this, Young now has developed a program infrastructure and methodology. “We give our Readers a set of tools. They've got science knowledge, they've got the arts, they've got human-engagement skills training, they've got peer and community support, a curricular faculty, and community support. Yes, it’s really up to them to figure it out. But when they do, it's pretty magical.”

That magic, Young believes, may come from an unsuspected connection between early Alzheimer’s patients and kids at middle-school age — the group from which most Sweet Readers come. Both cohorts, Young argues, are in periods of profound transition; these transitions carry with them major risks and repercussions. As Young puts it, “When you're in middle school, your brain is changing rapidly. Your body is changing rapidly, and you're really not sure of where you belong. You're not as cute as the little ones, and you're not as cool as the high school kids. If you have Alzheimer's, your brain is changing rapidly and your body is changing rapidly and you're not sure you're relevant anymore. You're not sure if you say something, if it's going to be out of context, if you're going to feel silly and you're not sure if you even matter.” Young points out that this connection has grown even deeper in the age of COVID. Isolation is par for the course for any number of Alzheimer’s patients, a condition that Sweet Readers was set up in part to remedy. Now, says Young, the millions of school-age children who have lived through quarantine and social distancing have a deeper understanding of what isolation is like. “I think the kinds of supports they can give the kids are really grounding for the kids at a time when the kids need grounding,” says Young.  “I think it's really revitalizing and purposeful for the adults that really need to have purpose. The community that you build by these multi-generational pieces is thrilling.”

This unlikely connection is borne out in another moving story from the program. Sweet Readers, working in conjunction with eighth graders at Brooklyn’s Berkeley-Carroll School, launched an intensive research and care project with another day program for early-stage Alzheimer’s patients. One of them, in Young’s memory, was obviously suffering: Rosemary.

"Every time I went,” says Young, “it was the same thing. Rosemary was alone. She'd been removed from the program. She had these two men on either side of her and she was screaming. She was obviously in pain. Looking at her, you could see she was trapped, see that the two men were restraining her to try to protect her from herself." Enter Olivier, a Sweet Reader. On the second day of the Sweet Readers intervention, Rosemary, Young recalls, walked in and sat down next to Olivier. As the two medical aides were about to remove her Olivier looked up and said: "Do you think you could let her stay? I'd like to work with her."

Olivier was able to discover, simply by reading to and speaking to Rosemary, that she did not like to be touched — that her distress was being exacerbated by being restrained. Rosemary suffers from a form of dementia called frontotemporal dementia (FTD), formerly known as Pick’s Disease after its discoverer the eminent neurologist Arnold Pick. FTD inflicts damage on the centers of the brain responsible for formulating and understanding speech, which — as Young points out — renders social situations deeply fraught for its sufferers. That Olivier, using the Sweet Readers methodology, was able to find a communication channel to Rosemary is remarkable. That it served to help ease her suffering and distress is a testament to the power of language in human life and the necessity of Sweet Reader’s mission.

That remains true even now when in person visits like Oliver and Rosemary’s are no longer possible. Indeed, connection — be it digital or otherwise — has become ever more important in the age of COVID. The new platform and programming Young’s group has built place an emphasis, she told us, on interactivity: participants are “not going to be just looking at a screen.” This is as crucial for older adults as it is for children (anyone who has suffered through Zoom classes with younger kids can attest to the need for real engagement).

As noted, COVID dominates media around health and related social issues. That doesn’t mean any other widespread health problem gas gotten less severe. Dementia afflicts .7% percent of the global population. By 2050, that figure is set to double due to the explosive growth in the number of people over the age of 60. The vast majority of this increase is expected to take place in developing countries. Facing this difficult future, programs like Sweet Readers are only going to become more essential to public health. Which means it’s imperative that the public and private sectors do everything they can to make sure stories like that of Rosemary and Olivier become the norm rather than the exception. Sweet Readers’ post-COVID work — which will, according to Young, contain not only a broader set of tools and platforms but also a wider group of Readers, since the organization is now recruiting readers ranging in age from 11 to 22 (its previous age cutoff had been 14) — will be a shining example of how do to just that.