Photo credit: Philip Bedford

About 47 million people worldwide live with dementia, and this number is projected to increase to over 131 million by 2050. The total estimated worldwide cost of dementia is approximately $818 billion, expected to reach $1 trillion by 2018. Of the approximately five million people living with Alzheimer’s in America, 3.2 million are women. Studies have shown that women in their sixties are twice as likely to develop Alzheimer’s than breast cancer. Two-and-a-half times as many women than men provide intensive 24/7 “on-duty” care for someone living with Alzheimer’s disease, and among these caregivers, women are much more likely than men to link their attendant isolation with feeling depressed (seventeen percent of women vs. two percent of men).

It is not yet understood why women are more prone to developing Alzheimer’s than men, but one explanation could be the simple fact that women live longer than men, as age correlates directly with developing dementia. Another theory is that women who carry a form of the gene ApoE-4, one that increases the risk of Alzheimer’s, are more prone to developing the disease than men who carry the same gene. Whatever the ultimate cause, Alzheimer’s poses a serious threat to the health and well-being, naturally to the patients themselves, but also to their caregivers, spouses, daughters and even granddaughters. This underscores the desperate need to eradicate this disease for which there exists no cure.

Sophie’s Story

When I was ten years old, my grandmother was diagnosed with Alzheimer’s. Being an only child descended from a long line of influential, inspirational and dedicated women, I was horrified to see that my grandma, who had always stood tall, now felt so small and insignificant inside. I wondered why Alzheimer’s, a disease that seems to rip the humanity out of a person, was brought to my grandma, and in this time of panic and confusion, I had no answer. It was even harder to see the effect Alzheimer’s had on my mom, who had to watch her own mother slip away.

Photo credit: Philip Bedford

I frequently compare Alzheimer’s disease to secondhand smoke. Although my mom and I did not physically suffer the disease, we still felt its profound impact. I couldn’t stand still and watch my grandmother’s voice be stifled; I needed to take action. Since science has not provided a cure, I chose to tackle the disease in an unconventional way.

In the summer of 2010, my mom brought some of my childhood books to my grandmother’s apartment. One day, while I was visiting, I decided to pick up one of these books, “Goodnight Moon,” and read it to my grandma. Although “Goodnight Moon” is considered a children’s book, the reaction from my grandma, while listening, was beautiful. Her entire face lit up as I read, and when we got to the end of the book, we starting rhyming together. I would read, “good night comb,” and she would reply, “goodnight brush,” and on and on we went. I was so grateful for the joy the storybooks brought my grandma, and soon she and I developed a routine. Several times a week, I would visit and simply read to her. As our relationship developed through literature, I wondered if other adults with Alzheimer’s would experience the same joy that reading brought to my grandma.

I decided to take a chance and read to my grandma’s daycare group, a community of seventeen seniors, all with some form of dementia. While they were at different levels of AD, like my grandma, they all became engaged, and I quickly saw something magical come to life. Was reading the answer to mitigating the effects of Alzheimer’s, or was it the interaction with a young person in particular that bore the solution? Reading soon evolved into poetry, which then expanded into art. Each week I visited my grandma’s day care center, and a new project developed. I felt such a sense of fulfillment, not only because I saw the elders respond in such a positive way, but also because I was able to make their day a little bit better. I wanted other middle-schoolers to have the same experience and decided to bring the idea of middle-schoolers connecting with elders struggling with AD to my own school.

My mom and I created a program, which blossomed into a non-profit; our mission is to bring together middle-schoolers and adults with Alzheimer’s through art-based programs in museums, care centers and schools. We called our initiative Sweet Readers and, five years later, have programs in six cities and two countries. We have impacted over 9,000 participants and plan on bringing change to many more communities. My grandma passed away this past winter but during the last few years of her life, whenever I talked about Sweet Readers, a smile would spread across her face and I know that, if she were still here, she would be just as proud.

Photo credit: Philip Bedford

A few days ago, I was able to interview Mabel Lewis, a sophomore in high school and an avid Sweet Reader and activist. I asked her three simple questions but her responses were profound.

1. How do you think kids can change the face of Alzheimer’s?

“I think the vulnerability of the kid and elder allows for a very meaningful connection. This innocence, coupled with the fact that you can connect wildly different demographics, creates another important dimension, and that is youth empowerment. It’s incredibly cool that adults with Alzheimer’s can strip human interaction of all pretense and make something really meaningful out of a simple conversation. And it’s conversations like these that will break down the unnecessary stigma that surrounds the disease.”

2. How do you feel knowing that Alzheimer’s is more frequent for women than men?

“It saddens me to know this, but little can be done with just sadness. What is much more powerful is that this fact makes me want to act on my sadness and do something, be a part of mitigating the effects of this disease.”

3. For people who have a family member with Alzheimer’s, what tips would you give them?

“Creating an environment in which all members feel comfortable is so much easier than one might think – and it’s an environment like this that fosters genuine human engagement. It’s actions and words, a simple smile, a silly story about your day, or even a laugh that can change a room.”

Around the world there are millions of people struggling with Alzheimer’s, yet there are also many kids who can make a difference. Women are at the frontlines of this disease, but it will take a universal effort to eradicate it. Alzheimer’s impacts everyone and if we take Mabel’s advice and become empowered to join the fight, rather than be scared or saddened, we can change how our population perceives Alzheimer’s and perhaps become catalysts for more aggressive research and better healthcare, and, eventually, see an end to this devastating disease.

Sophie Young is a Junior High School student and the Co-Founder of Sweet Readers, Inc.

TOP PHOTO CREDIT: Philip Bedford