Improving Healthcare, One Story at a Time, with Jay Newton-Small, MemoryWell

MemoryWell is making lasting memories for Alzheimer’s and dementia patients.

Jay Newton-Small knows a thing or two about storytelling. She’s worked as a journalist for more than 15 years, with her work appearing in Time and Bloomberg.

Jay’s father Graham was diagnosed with Alzheimer’s when Jay was in college. He became one of her first in-depth interview subjects. She spent many hours interviewing him and grew to become his voice. When her mother passed away in 2006, Jay became her father’s primary caregiver.

When Jay moved her father, Graham, into an Alzheimer’s assisted living facility, she knew that it was time to tell his story. Upon arriving at the facility, she was handed a 20-page questionnaire asking for details about her father’s life.

“I handed in the form blank and said I wanted to write a story that would be easier for me and easier for them,” Jay explains. “I wrote down his story and they absolutely loved. It completely transformed his care.”

Graham grew up in Australia, and that served as the basis for his story. As his Alzheimer’s progressed and he grew more violent, his caregivers knew to bring up kangaroos and other anecdotes to calm him down. “Knowing that life history and where he was from made his caregiving so much easier,” Jay explains.

That one story has grown into MemoryWell, a network of 350 journalists across the country who are capturing the lives of Alzheimer’s and dementia patients for their loved ones and caregivers. Jay said those writers are “giving voice to the voiceless” in Alzheimer’s communities, where staff turnover can be as much as 50 percent in a given year.

Making connections

Rather than having to introduce themselves to each new person, patients can present their MemoryWell story. Their story becomes a catalyst to warm a new relationship with each caregiver. The stories also help facility staff get to know each patient as a person, rather than as someone that they shuffle from place to place throughout the day.

The stories collected benefit three main groups:

The Alzheimer’s or dementia patient. Research shows that storytelling can reduce depression and increase empathy and bonds with caregivers. Caregivers: “This is a miserable job, that’s why there’s so much turnover,” Jay said. “Taking someone to the bathroom five times per day who you don’t know and can’t really speak to isn’t very much fun. Anything that makes their jobs better also help the patients.” Families, who benefit from the legacy building that the stories cultivate. In some cases, they learn new things about their family member and are able to pass along those stories to future generations.

Assisted living facilities display the stories to help residents and staff get to know one another and form a sense of community in what can be a very isolated environment.

“Building those bonds is incredibly powerful,” Jay commented.

MemoryWell stories can be useful for anyone, not just Alzheimer’s or dementia patients. Jay said the company works with families who simply want to preserve stories from an older generation.

Turning stories into a business

Jay’s reporting has taken her to five continents. She has interviewed every living president. In 2016, Jay covered Hillary Clinton’s presidential campaign for Time. She left the magazine in November 2016 to focus exclusively on MemoryWell.

Telling stories is one thing, but starting a business is something else entirely. Jay applied her journalism background to ask the right questions and understand the process of how businesses operate.

After Jay wrote her father’s story, she asked journalist friends to write stories about other families at the recommendation of caregivers. Over time, she learned that being able to print the stories was important because many assisted living facilities do not have Wi-Fi and that adding photos and videos helped create more compelling pieces than those with written words alone.

The company received its first paying clients in fall 2016 and incorporated shortly after. She was still covering politics at the time and decided that if she continued on the journalism path, she would regret not giving MemoryWell a shot.

Jay decided to pursue MemoryWell full-time in mid-October and resigned from her position at Time. She is still involved in politics as a contributor to CNN and MSNBC but says she’s happy to be away from Washington and focusing on more meaningful stories.

“It was so impactful to tell these stories and see the hands-on impact they have in ways that you don’t really get to see as a journalist when you’re writing for an audience of millions,” she said.

Jay did not have technical experience before starting MemoryWell and sought help from a hackathon at MIT to launch the MemoryWell website and app.

The company’s funding comes both from business-to-business and business-to-consumer sources. Thus far, the company has worked with nursing home companies in Chicago and Florida and is preparing to take on a few companies with facilities nationwide. Families can also buy a story, which is generating revenue from the business-to-consumer side.

Jay recently joined the board of Good Samaritan Society and is hoping to start a MemoryWell pilot with some of its 550 facilities across the country.

A growing need

The need for MemoryWell will only continue to grow. Jay said there are some 5.5 million people with Alzheimer’s in the U.S. and another 11 million with dementia. Many of those people do not remember recent events well, but can clearly recall stories and experiences from their childhood, early life, or middle age. Those anecdotes help inform the MemoryWell stories.

Jay said this work is also important because the generation battling Alzheimer’s and dementia right now is not as digital as their younger counterparts. They are less likely to be on social media or have other online accounts about their lives.

The company is currently only incorporated in the U.S. but is interested in expanding globally. Jay has received inquiries from clients around the world, including a large nursing home company in Australia. She is figuring out how to put the reporting infrastructure in place to bring those stories to life.

“I don’t think you would be successful if you used American journalists to tell Australian stories because there’s too much cultural difference,” Jay said. “Local voices and local perspectives are important.”

Jay is the author of Broad Influence: How Women are Changing the Way Washington Works. She explains that starting a business is a lot like writing a book. Both require the same amount of passion for an idea and the drive to turn it into reality.

“You’d better love your topic because you’ll spend so much time with it that if you don’t love it, you’ll hate it and hate yourself in the end,” she said. “It is so all-encompassing and requires a degree of passion that you really need.”

Jay encourages everyone to set aside some time to capture their loved ones’ stories before it’s too late. It’s an easy thing to push off given how busy everyone is, but should be prioritized to preserve those legacies for future generations, she said.

“If you keep pushing it off, one day you won’t have the option of telling that story. Find a way to ask your parents, grandparents, or other seniors around you about those stories and capture them because otherwise they’ll be lost forever.”

Social Entrepreneurship Quotes from Jay Newton-Small

“We are giving voice to the voiceless.” @JNSmall @MemoryWell

“As a journalist, we love the idea that there are millions of stories out there” @JNSmall @MemoryWell

“Stories have a lot of uses and we believe that at their core, they can form community.” @JNSmall @MemoryWell

“Storytelling comes naturally to me in many ways.” @JNSmall @MemoryWell

“I thought I would always regret not giving MemoryWell a shot.” @JNSmall @MemoryWell

“My Twitter feed is like Dr. Jekyll and Mr. Hyde, it’s pretty funny.” @JNSmall @MemoryWell

“I have no technology background and am a complete luddite.” @JNSmall @MemoryWell

“You can buy a story and we will tell it right then and there.” @JNSmall @MemoryWell

“Selling a book, you feel like you’ve personally sold every book and starting a company is very much like that too.” @JNSmall @MemoryWell

Social Entrepreneurship Resources MemoryWell website: https://www.memory-well.com/ MemoryWell Facebook: https://www.facebook.com/MemoryWells/ MemoryWell Twitter: https://twitter.com/MemoryWell Book: Broad Influence: How Women Are Changing the Way America Works: http://amzn.to/2zgM1MQ Book: Crazy Good Advice: 10 Lessons Learned from 150 Leading Social Entrepreneurs: https://tonyloyd.com/book