The Blog to Transform Advanced Care
Advancing Care through Innovation, Observation and Collaboration.
When Jay Newton-Small was given a 20-page questionnaire to fill out about her father, who was living with Alzheimer’s and entering a housing community north of Washington, D.C., she knew there had to be a better way. Instead of completing the form, Newton-Small, a Time magazine and Bloomberg News journalist, wrote her father’s story in one page – front and back. The caregivers, she says, “loved it.” And so did her father, because it enabled them to talk to him about his life, particularly his work and travels as a U.N. diplomat.
From that experience in 2013, Newton-Small founded Memory Well, a company devoted to capturing life stories, not only with the purpose of preserving family histories, but also to enhance person-centered care. The stories are all like Newton-Small’s first one — one-page, double-sided and laminated so that caregivers in facilities can easily pull them out of a file. There is also a digital component, a virtual scrapbook where families can add information, photos, movies and/or a timeline for sharing and remembering among the family members.
“It’s very interactive,” says Newton-Small. “Even if you’re far-flung, you can feel like you’re involved in care.” She adds that the data can be collected from many residents in a community, exported and printed it so that administrators and caregivers can find commonalities, such as, for example, there might be “23 people who love Frank Sinatra,” she says.
The Memory Well system becomes a valuable tool for planning activities and for better understanding and knowing the residents. And business is booming. In the last quarter, Newton-Small says she has signed twice as many contacts as she has in the company’s entire existence. Since opening in 2016, there are now five full-timer staffers and Newton-Small is hiring a sixth. The company, whose mission is to “build empathy, one story at a time” has more than 700 writers (each is paid a flat fee for each story produced) and are in about 40-50 senior living communities, adult day care centers or home care franchises in 20 states. Newton-Small is particularly excited that Memory Well is piloting with Medicare Advantage plans and hopes to expand to other insurance plans as well.
As a caregiver-turned-entrepreneur in this space, Newton-Small knows that advanced illness can be a difficult topic. “On my mother’s side, I had that experience. I had to unplug her. She was brain dead but still breathing. I had to go through the whole process. She had no advance directives.” Newton-Small recalls that the doctors wanted her to donate her organs, but she had “no idea” what her mother’s Chinese beliefs were; she had to e-mail her mother’s siblings in Australia to find out. “It was very wrenching,” she says. “I always say the kindest thing you can do for your children is tell them what you want.”
More open conversations from caregivers would be helpful, too. “I feel comfortable talking about my caregiving of my dad. I really wish more caregivers would speak openly about their caregiving experiences. It’s like this dirty secret people have. They wouldn’t want to offend their loved ones by talking about how hard it is or ‘that’s a family thing so we don’t share it’. But it isn’t until people start talking about hard it is that we’ll get the resources to help care for these folks.”
In the meantime, Newton-Small says the advanced illness care field is full of devoted, kind people. “I find it to be a really tight-knit community where people are generally really friendly. It’s a space that’s really quite a calling. People don’t go into it to make a million dollars. They do it because they have some personal experience and they have something they feel passionately about changing. They’re incredible, frankly.”
Moving forward, she hopes for a shift in thinking about the end of life. Citing surgeon and author Atul Gawande, Newton-Small says that there’s a sense in our culture that you “have to live every moment, and if you die a minute early, you’re betraying your family.” But in reality, she says, “There’s not enough attention paid to quality of life.”
She’s optimistic about the advanced care realm, however. “There’s a lot of dynamism. People are coming into the field. People are paying attention to it, but it needs even more attention, more people asking questions about innovation, and more challenging it to disrupt it. We won’t get the best possible system of care unless we challenge it and ask questions about it.”