This Startup Is Transforming Alzheimer’s Care One Story At A Time
By 2050, more than 16 million Americans are expected to be diagnosed with Alzheimer’s. Much of the effort around this disease has been focused on prevention—however, as our population ages, there must be a shift to improve the quality of care for these patients. With an increasing number of caregivers experiencing burnout, it’s pivotal for our healthcare system to start considering creative solutions to this problem.
MemoryWell is proving to be one of these solutions. Founded by Jay Newton-Small, a former Time correspondent, MemoryWell is a D.C.based startup that uses the power of storytelling to improve the long-term care of those living with Alzheimer’s and dementia. Care Communities use MemoryWell to better care for patients by having access to each of their life stories.
For the vast majority of Americans living in major cities, the sight of garbage-strewn pavements, overflowing trashcans and filthy parks seems to be relatively rare. New research from YouGov examined perceptions of cleanliness across the country’s 20 most populated metropolitan areas, finding that most residents are upbeat. People in Minneapolis-St. Paul and Dallas-Fort Worth were the most positive with 90% reporting that their cities are very or somewhat clean.
Over 85% of respondents in both Denver and Orlando Daytona Beach-Melbourne were also satisfied with their sanitation situation. People living in Los Angeles were the least likely to call their city clean, though a 69% majority still called it very or somewhat clean. Seventy-one percent of people in Philadelphia called their city clean, along with 84% of residents in both New York and Chicago.
Stories are printed out and hosted online, where family members can post the patient’s favorite art, music, and readings. As of today, MemoryWell has a network of over 400 journalists across the country who are writing these stories and is currently in nearly half a dozen nursing homes. They also are in talks with five medium-to-large care chains to pilot and just completed a successful Kickstarter campaign, raising over $57,000.
Newton-Small started this company after experiencing the inefficiencies in this market first hand. When she was in college, her father was diagnosed with Alzheimer’s and, after her mother passed away, she became his primary caregiver. At the time, she made the decision to put him in a nursing home so he could receive the best care. When she arrived, she was handed a 20-page questionnaire to fill out about his life. “I’m sitting there writing down these answers and thinking, who reads 20 pages of handwritten data points for 150 residents in this home? So I handed it in blank and told them, ‘Look, I’m a journalist, let me write down his story.’”
She proceeded to do just that—and it absolutely transformed his care. She describes how every caregiver remembered his story, and it gave them a lot of empathy towards who he was as a person. “Two of his caregivers were Ethiopian and he had spent time in Africa, so it really created a bond between them. My dad could no longer tell his story and he was getting violent because people were touching him, which he didn’t like. But if you came up to him and said ‘your little sister Cecile sent me this picture’ or ‘your daughter Jay is coming over later today’, he at least thought he must know you and that you definitely knew him. And so I decided that I wanted to give that experience to other people.”
This turned into a four-year project where Newton-Small would ask her colleagues to write the stories of her father’s friends. After demand for the product grew, she decided to turn it into the company that it is today. MemoryWell sells primarily to nursing homes, but they also have a B2C product that grew out of a viral Washington Post Article that was written about the company. They had more than 3,500 people contact them. “It became really clear that there was a huge demand for stories to be told, whether somebody has Alzheimer’s or ALS or Parkinson’s, or even someone with a grandpa that has an incredible story about fighting in World War II. We have all of these amazing people approach us saying ‘we really want our stories told’.”
In our conversation, Newton-Small tells me about some of the challenges in building her company. She explains that one of the hardest parts has been keeping a focus on the core product. Because there is such an interest in this idea, people often approach her for different purposes—from writing children’s stories to writing employee profiles for companies.
“There are so many different ways to use journalism, which is really exciting, but it’s also been really hard to focus and prove out a niche. What we do, to me, has huge potential. When I was at Time, I used my talents to tell the stories of the powerful and the rich and the infamous and they were read by millions. Now I’m using those same skills to tell the stories of everyday people, and it might only be read by 20 or 30, but it has a much deeper impact on that life. And that’s really rewarding.”
She also explains that she has received a lot of pressure to create a DIY product, which would allow her to scale faster. However, she is firm in her decision to continue with this model. “People are too close to their own lives, so DIY products can create so much strife and angst. One of the questions on the original questionnaire was: tell me about your parent’s marriage in three lines. And I was like, how am I supposed to summarize this? But if a journalist calls you and says, talk to me about your parent’s marriage, that is a much easier proposition. It’s not a simple easy button press solution, but it’s a much better product, and it’s much more enduring. And the idea of potentially capturing millions of stories would put us in the frontline of history for a generation that is very nondigital.”
Despite these challenges, she has been laser-focused on her goal and in the process has become an expert in this challenging industry. Early on, she discovered that most of these homes don’t have Wifi and are often times run by nuns who write out physical checks. When she first mentioned the possibility of integrating a subscription model, it fell flat—it wasn’t something that they could really relate to. As a result, she explains that many who have tried to disrupt this industry before have failed because they create apps
that most staff members don’t have access to. Newton-Small is trying to change this by creating a product that bridges the digital with the analog, which in this case is the printed story and the digital one for family members.
MemoryWell is a testament to the power of storytelling not only in its product but also in the way the company presents itself. They have received organic PR by outlets like DCInno, KCRW and NPR. “There is something really attractive to journalists about telling stories. And that’s something that many companies don’t do enough of. Journalists—we love stories. We are, at the core, storytellers. It’s what drew me to the company and it’s what draws other journalists to write about us. We also saw this when pitched at the WeWork creator awards. Startups had one minute to pitch their company, and while most talked about growth and traction, I got up there and told my dad’s story. I didn’t include any metrics, and at that moment I thought ‘I either nailed that or totally messed it up’ because it was just so different. And we ended up winning.”
Newton-Small believes that through storytelling, she will reach her goal of improving the care of millions that are suffering from this condition. She also believes that storytelling is essential in building any business, and should be a core part of that process.
Her best advice for someone that is just starting out? “In life, everything is about connections. People are interesting—find out their stories. I think the culture in Washington is that today’s interns could be tomorrow’s bosses, so talk to everybody. Help them succeed and they’ll help you later. You never know who you might meet. A lot of my contacts have led me down amazingly fascinating rabbit holes. I’m a big believer in being Alice, and chasing white rabbits.”