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Telling your story well can improve care

Jay Newton-Small’s father, Graham, received better care as an Alzheimer’s patient after she shared his life story with his caregivers. After he died, she founded MemoryWell to enlist professional writers to write biographies of older adults in care facilities. Photo courtesy of the Newton-Small family
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By PJ Feinstein
Posted on March 27, 2019

When Jay Newton-Small moved her father, who had Alzheimer’s, into a senior living community, she had hesitations about the extensive intake questionnaire she had been asked to fill out.

“Who was ever going to read and remember 20 pages of handwritten data points for the more than 100 residents in that particular community?” she said.

Newton-Small, who was a professional writer at the time, also found some of the questions challenging to answer succinctly. “You know, ‘Describe your parents’ fifty-plus year marriage in four lines.’ It’s like writing in haiku,” she said.

So Newton-Small turned in a blank questionnaire, and instead used her skills as a trained journalist to write her father’s story as if it were a magazine profile.

“There’s an expression in Alzheimer’s, ‘meeting people where they are,’ and I knew he was regressing at that point back to his earlier days,” she said. In order to help his caregivers better understand her dad’s current state of mind, she decided to focus her story on his experiences as a young man and his career as a U.N. diplomat.

The one-page, double-sided story was a hit with the staff. “Two of his caregivers were actually Ethiopian, and they had no idea that he’d lived in Ethiopia for four years early in his career with United Nations,” Newton-Small said.

“They became his champions. They would sit for hours and ask him what it’d been like to work with Emperor Haile Selassie and what the emperor had been like. Dad loved it because he remembered Ethiopia from his early 20s pretty well at that point in time, even if he didn’t often remember last week or last month.”

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Seeing how writing her father’s life story transformed his care, Newton-Small was inspired to help other family members tell the stories of their aging loved ones.

A few years ago, she founded MemoryWell (www.memorywell.com), a company that matches older adults and family members with experienced journalists who can craft personal narratives that “make for great cheat sheets” in senior living communities, giving paid caregivers the tools they need to individually engage with residents.

Plus, “knowing that person’s biography is a much more effective way to connect with them when they are upset,” explained Newton-Small.

She recounted the experience of a man with dementia, a former accountant, who would harass the other residents and staff in his community whenever they rang the chow bell.

“When we did his story, they finally realized that he’d also been a volunteer firefighter his entire life. There was the same kind of bell in the firehouse, and whenever he heard [the chow bell] he was trying to evacuate people,” she said. “They changed the bell to a chime, and he was no longer accosting people.”

MemoryWell primarily works directly with senior living communities (the stories were originally conceived as a tool for Alzheimer’s and dementia care), but Newton-Small believes that family members, particularly grandchildren, can benefit from them as well.

“Intergenerationally, it’s a point of commonality, of conversation, of connection,” she said. A young fashionista, for example, might learn that her grandmother used to sew her own dresses and form a bond over dressmaking.

The basic service for families costs $299, but MemoryWell also offers an option for families to build on their professionally-written 800-word stories using digital media for an additional fee. There is also a $2,500 option for a magazine-length profile.

Other options

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MemoryWell is just one of the many ways that older adults can tell their stories, whether to improve their care or simply to preserve memories. Today’s technology makes it possible for individuals to share not only their personal narratives, but also images, video and audio memories.

StoryWorth (www.storyworth.com

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), for example, sends weekly questions, such as “What television programs did you watch as a child?” and “Have you broken any habits over the years?” that can be answered by email, on the web, or in its app. (Personal photos can also be uploaded.)

As the storyteller, you can share your responses each week with as many friends or family as you’d like, and at the end of the year, all 52 stories are printed in a keepsake book. At $79, a regular subscription includes a year’s worth of story prompts and a black-and-white hardcover book.

If writing is not your forte, StoryCorps (www.storycorps.org

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) is a free service that allows you to record, preserve and share your oral history at StoryCorps recording sites around the country, or by using the StoryCorps app on your phone.

The 40-minute session is formatted as an interview between you and a loved one, or anybody else you choose, on any topic you’d like. Afterwards, you’ll receive a digital copy of the interview for download, and, with your permission, StoryCorps will send a copy to the American Folklife Center at the Library of Congress to archive.

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