Book of Life

COVID has dominated our collective consciousness for so long that it is easy to forget about other illnesses with a more chronic place in human society. Once such is Alzheimer’s, a neurodegenerative disease all the more horrific for the social cost it can inflict on people who live with it.

The disease is, as it were, an equal opportunity predator. “Alzheimer's has no bias. Alzheimer's doesn't care if you're rich or you're poor. It doesn't care where you live, what your politics are, what your socioeconomic status is. It doesn't care about your gender, your sex, or anything else.” So says Karen Young, founder and CEO of the Alzheimer’s-focused non-profit Sweet Readers. Sweet Reader’s intervenes in early-stage Alzheimer’s by allowing young people to interact with people living with Alzheimer’s through books and conversation.

The purpose? To unite generations in the struggle to help improve the lives of early-stage Alzheimer’s patients. “Scientists,” Young says, “have been trying for a hundred years to come up with cures. But there is no prevention, there is no cure. It looks as though that the future of Alzheimer's care the breakthroughs are going to impact people in the early stages.” Since the organization’s founding almost a decade ago, Sweet Readers has reached tens of thousands of patients with their unique program. The group’s mission, as described by Young, is “to empower young people to immediately revitalize adults living with Alzheimer's and to become catalysts for elder care excellence. These young people are our future doctors, providers of care, policy makers, and innovators.”

COVID, of course, changed the organization profoundly. With face-to-face, one-on-one visits impossible until widespread vaccine rollout, given the extremely high-risk older people face with respect to the novel coronavirus, Sweet Readers went digital. “We created a whole new platform called Sweet Readers Connect. We tested 125 different types of visits. And now we've evolved to the point where we're actually doing our programs virtually,” Young told us. “We built a new website. We built a new platform. In the summer, we then did 11 pilots of our group programs just to test different populations and different curriculums.” This speed and resilience should serve as an example to all organizations facing their own pandemic crises — and it is all the more impressive given the fact that Sweet Readers is not a massive NGO with bottomless pockets and gigantic infrastructure.

Indeed, the organization found its beginning in a deeply personal place for Young, an entrepreneur with extensive experience in charitable work. “In 2010,” she says, “my daughter Sophie, who was then 11 years old, and my mother, who was 88 and living with early-stage Alzheimer's, had a conflict. They didn't know how to connect. So Sophie started reading to her grandmother — and it went so well that she decided she would go to her grandmother's day program. There were 16 other people with various levels of Alzheimer's in that program. Alzheimer's is a complicated and progressive disease. Everyone deals with it a little bit differently. Some people were sleeping, some people were really scared. They didn't know what was going to happen. There hadn't been a child in their space — ever. Sophie sat down on a piano bench. The 16 adults were in a horseshoe around her, and Sophie came prepared with Dr. Seuss’s Oh, The Places You'll Go, Margaret Wise Brown’s Goodnight Moon, and Esphyr Slobodka’s Caps For Sale. She started reading. Within minutes a hush fell over the room. Followed, a few minutes later, by this incredible symbiotic joy. A sense of community. They're finishing Sophie's sentences, they're finishing the rhymes. It's a dance. And I had never seen anything like it.”

The question of aging has, perhaps, never been more prominent in the history of developed nations. People are living longer, which is, as Young is the first to acknowledge, far from an unmixed blessing. “Historically,” she notes, “there've been a few older people and there've been more younger people to support those older people. Now for the first time in history, the percentage of the elderly is increasing more rapidly than the young. One might argue, ‘Well, it's a pyramid. There's enough younger people to support the people.’” Perhaps. Yet the diseases of senescence, including all forms of dementia, are only now beginning to demand the kind of broad-spectrum attention they deserve. And, as Young points out, “caring for Alzheimer's is tricky. It's complicated. It requires training. And the people who are getting into that field are declining in numbers — though here are now 47 million people in the world living with Alzheimer's. And those are just the reported cases.”

From the confluence of these broader social factors with the happy coincidence of her daughter’s experience reading to patients, Sweet Readers was born. Almost, in Young’s telling, by happenstance. She recounts how, not long after her daughter’s first experience as a therapeutic reader, she came home from school and told her her: "Mom, everyone signed up." Young was baffled until her daughter explained that he had recruited her class to serve as therapeutic readers as well. Despite the fact that there was no existing infrastructure for the program, Young took this impetus and ran with it. She took the idea to MoMA and the Met as a potential partnership with other Alzheimer’s care programs. Within six months, they had pilot programs in place at both institutions. Before long, Young recalls, "[w]e got a phone call from the Met.  They were having an exhibit for Faith Ringgold for her poetry quilts and they wanted me to bring the Sweet Readers. And in that moment I realized, "Wow, the Met's calling. I think we have something.'"

The program has since expanded exponentially. Young cites the presence of Sweet Readers in three countries and across the U.S., in Chicago, Washington, and Connecticut. The Readers themselves are a diverse bunch. “Some of them are from schools with special needs,” Young says. “Some of them are from low-income schools, some of them from elite private schools. It doesn't matter. Because just like Alzheimer's has no bias, the power of a child has no bias either. It doesn't matter if your life has been centered on your special need, it doesn't matter if you've come from an area of disadvantage. You still have this amazing ability to impact a life for the better.”