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This former journalist helps caregivers get to know who their patients once were, before dementia took hold

Jay Newton-Small, a District resident, started a business writing anecdote-filled profiles of dementia patients after her father got Alzheimer’s. (Photo: Nikki Kahn)

Three years ago, when Jay Newton-Small moved her father into a care facility in Sykesville, Md., she was given a 20-page questionnaire to fill out. Her father had Alzheimer’s disease, and his fading memory and agitated behavior made it hard for caregivers to understand his needs. But as Newton-Small leafed through the lengthy form, she had a hunch that it was not the best approach.

“I was like, ‘You’re never going to have time to read 20 pages on each patient,” said Newton-Small, a District resident who was a reporter for Time magazine. So, at the risk of the staff thinking she was “weird,” she offered to use her professional skills to write her father’s story for them — including the bit about how he was once a part-time driver for Winston Churchill and how he liked to amble around the cypress trees and lavender fields in the south of France, where he had a country home. 

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“They loved it,” she recalled. Knowing personal details of her father’s life helped his caregivers understand trigger points that could upset him and references that might please him. “It completely transformed his care.”

The experience was so powerful that Newton-Small began compiling stories for others, first as a favor to friends and then as a start-up business that provides memory care facilities with online profiles that comprise personal anecdotes, photos, videos and recordings of favorite songs. This fall she left her reporting job to pursue it full time.

Working with two partners and hiring freelance journalists to conduct interviews and gather photos and other media, her organization, MemoryWell, has provided profiles of a dozen people at three facilities, and is piloting with five more organizations.

Research shows that quality of care increases and aggressive behavior decreases for long-term care patients whose caregivers are familiar with their life histories. But even well-trained caregivers can have a hard time breaking through to people whose memories are shrouded by dementia, Newton-Small said. “They don’t have any context to understand why they’re doing what they’re doing … It’s really isolating.”

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The problem is exacerbated by the fact that facilities often have high staff turnover rates, making it less likely that caregivers will have time to learn about each resident’s personal details.

When they do, it can be rewarding on both ends. A caregiver for Newton-Small’s father was amazed to learn that as a U.N. diplomat, he had been deeply familiar with her home country. “She said, ‘Oh, my God, I can’t believe your dad lived under Haile Selassie for eight years and met the emperor!’ And he loved it. She spent hours showing him pictures of Ethiopia, and it formed these bonds.”

At one facility, a meal bell used to send a resident into a panic. It wasn’t until the staff realized that he had been a firefighter that his reaction made sense.

After trying out the profiles with five residents at St. Pauls House in Chicago, the facility hopes to expand to all 20 of its memory care residents, said Andrew Kazmierczak, the facility’s executive director. They are particularly helpful for new residents, he said, noting that “that transition period is always the hardest part.” It can also be beneficial to families. “They love going through the process, telling the story of their mom or dad or loved one.”

Until seeing her profile, caregivers for Mary Daly, a St. Pauls resident, did not know she had a PhD in public policy, or that she was an accomplished people manager. Once they did, “some of her behaviors, like trying to organize things, started to fall into place for them,” said Sharon Daly, her sister. “They talked about trying to tune in to her need to manage the world and fix the world.”

Now, they know that giving her a task — like wiping the table with a kitchen towel — makes her feel good. And in recent months, her sister said, she has seemed more content.

“It gave the caregivers confidence,” Daly said. “With Alzheimer’s folks you can feel like, ‘I’m not getting anywhere,’ but this made it feel like it was something they could work with.”

Bev Albert, a Chicago resident whose mother June’s profile was added to the site this year, said it had allowed her caregivers to see past the cantankerousness that dementia had brought on. “She was a big civil rights activist, she had a real passion about people and fairness and love,” said Albert, whose mother died last month at age 90. “So it’s helpful for them to know that ‘Even though now she’s yelling at me, last year she was yelling in a protest.’”

Having professional journalists write the profiles is crucial, Newton-Small said, adding that when that task is left to the families, “some are well-written, but the vast majority are terribly written, and families take months and months to fill them out. You have to find somebody to synthesize the information.”

The stories, which take only a few minutes to read, are more convenient for staff than thick files that can contain medical information and other data along with personal details, said Kelly Cooke, St. Pauls’ lifestyle director.

“It’s more digestible to read and it makes the person almost more human; it paints a portrait of who they were in their former life versus the forms given out by social services that give a picture of who they are now,” Cooke said, adding that being able to pull the stories up on their smartphones also makes it more likely that caregivers will read and refer to them.

Although some profiles on MemoryWell’s website are accessible to the public, many are not, at the request of family members. In several cases, caregivers see a different version from family members, who may not want to be reminded that Aunt Sally recoils at the mention of Uncle Joe.

In February Newton-Small will start a six-month live-in residency at Halcyon House in Georgetown, which helps start-ups develop business strategy. She does not know what the facilities and families plan to do with the profiles in perpetuity, but hopes that even after residents die, the stories can somehow exist as memorials.

“This is a generation that doesn’t have much of their stories online, that doesn’t have much of a digital footprint,” she said. “I like the idea of being a repository for people’s stories across generations.”

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