En español | I started Sweet Readers with my daughter and mother in 2011, when I was 48. Our mission is to empower trained middle school students to revitalize adults living with Alzheimer’s or a related dementia, and thus become catalysts for change. We partner with schools, elder care centers and major museums, and train art educators and school faculty to facilitate our six-week programs.
Our programs have engaged more than 18,500 teens and 7,500 adults, in 39 communities in three countries. We are especially proud of our Sweet Readers with learning differences and those that are underserved — collectively 44 percent of all Sweet Readers — who often go on to become leaders in their communities. Our Young Leaders (select high school students) raise awareness about Alzheimer’s and brain health.
The problem I’m trying to solve
As boomers age, the prevalence of Alzheimer’s is escalating; the annual global cost of care for the 47 million people living with this progressive neurological disorder is over $818 billion. This is a crisis of draining care needs, stigma, isolation and loneliness; it ripples through families and communities, and transcends gender, race, socioeconomics, politics and geography.
At the same time, as more and more young people increasingly rely on mobile devices as their major source of communication, they may become further removed from social connectedness: how will this affect their ability to develop the patience to sustain fulfilling personal and professional relationships and solve the world’s problems?
When a trained young person engages with an isolated adult living with Alzheimer’s as part of a community, the results are frequently remarkable! Both the adult and child begin to feel loved, heard, needed and full of purpose. For the adult, this frequently means less agitation, which eases the burden and expense of care for their loved ones and care providers. For the child, it’s an opportunity to become a patient, empathic and creative problem solver. As Sweet Reader Julia said: “Sweet Readers has taught me about human connection, that the littlest things can make the biggest connections.”
If we can connect generations and bridge communities through Alzheimer’s, maybe we can turn this crisis into a great unifier, led by an informed generation of our future care givers, scientists and policymakers.
The moment that sparked my passion
When I moved my mother from her home in Westchester County into Manhattan, near me, my husband and daughter Sophie, it was a challenging transition for us all. My daughter Sophie, then 9, was used to my full attention.
The summer before Sophie entered 5th grade, I decided to paint her room her favorite blue to give it a grownup feel. We donated many of her childhood books, but I couldn’t part with Goodnight Moon, Oh, The Places You’ll Go, Caps for Sale and Rolie Polie Olie, most of which my mother had read to me when I was a child and I had read to Sophie.
When Sophie returned from camp, she started reading the books with my mother and it sparked an instant connection and tremendous joy. Sophie then asked, “How about if I read at Grandma Dorothy’s day program?” Soon after, she sat on a piano bench with 16 adults in a horseshoe around her and read Oh, The Places You’ll Go and Rolie Polie Olie. As Sophie shared the illustrations and modulated her voice with every character and line, the adults became immersed, even finishing many of her sentences. When we left, exuberant as she recalled the transformation of the adults in the group, Sophie was literally skipping down 85th Street.
At that moment I envisioned millions of children flooding adult care centers around the world, opening their hearts and minds to people with Alzheimer’s.
Advice to others who want to make a difference
Be clear and passionate about your mission. If you are, then the hard work and challenging decisions will be easier.
In my fifties I am learning that working smart is even better than working hard. Taking time off and doing things unrelated to your work is essential to a clear head, creativity and innovation. And being with people you love and like, exploring different cultures and the arts and nature, all contribute to more nuanced understanding of the world and people.
The struggle that shaped my life
When I was 20, my brother Andrew, who was 23 and my best friend, was killed in a car accident. After struggling with the crushing grief, I eventually developed a feeling of responsibility to live well and do my part to make the world just a bit better, because Andrew couldn’t.
I have witnessed shocking mistreatment of vulnerable and disabled people in my life. It was extremely difficult for me to come to terms with the fact that I could not fix the circumstances or shield the people, especially because my mom taught me that I could do anything if I set my mind to it, and I believed her. What helped shape me was the knowledge that with my life and tools, I could turn their trauma and my frustrations into a way to influence people to understand the value of the vulnerable and the importance of treating all people respectfully and empathically.
Why my approach is unique
While there are many excellent programs for adults with Alzheimer’s to engage with the arts, Sweet Readers was the first (and I believe only) youth organization to provide training and a structure that integrates science, the arts and human engagement. It also includes peer and community support. As we begin a longitudinal study of our impact with the Icahn School of Medicine at Mount Sinai this fall, we are buoyed by what we have already seen. As Sweet Reader Julia commented, “Over time I stopped feeling sorry for Marvin and began to see the person behind this terrible disease.”