WHAT YOU NEED TO KNOW
A former journalist found that writing a short ‘life story’ about her father, who had Alzheimers, improved his care at an assisted living facility. She started a platform to produce narratives that can help caregivers learn more about the people they work with. The life stories have improved patient care, workers and managers say.
When Jay Newton-Small moved her father Graham, who had Alzheimer’s, into an assisted living facility, he was no longer able to tell or remember much of his life story. His daughter was asked to fill out a detailed questionnaire about his life, but she wondered, who would remember 20 hand-written pages for each of the 100-plus residents in that community?
Tapping into her experience as a longtime Time magazine correspondent, Newton-Small tried a different approach: she typed up his story on one page for his caregivers and pasted it on the walls.
Newton-Small says that this simple act of storytelling transformed his care. Born in Australia, her dad had lived an adventurous life on three continents as a United Nations diplomat. “From the food servers to the podiatrist who clips his toe nails, none of them knew much about him,” she says. “Until they read his story, they treated him like a checklist, you know, get him dressed, get him shaved, get him fed. Each of these things is a check, but when you find some form of commonality, it changes your whole relationship.”
For instance, two of his caregivers were Ethiopian and were fascinated to learn that Graham Newton-Small had lived in Ethiopia for several years during his career with the UN, and they wanted to hear all about his encounters with Emperor Haile Selassie. “They became his champions,” Jay Newton-Small says. “They would sit with him for hours and ask him what it was like back then, and even though my dad didn’t remember what happened last week or last month, he still remembered what he had done in his twenties.”
Newton-Small found the experience so transformative and so many families approached her about doing the same for their family members that in 2017, she founded MemoryWell, a platform that allows patients and their families to create short life stories with the help of professional writers. The goal is to enable caregivers to relate to their patients. Families can contribute by uploading photos and memories. The initiative has received several noteworthy awards, including the Not Impossible Healthcare Breakthrough Award in 2021.
Though the pandemic with its caregiving crisis put a huge dent in the endeavor — most caregivers were too overwhelmed to think about anything beyond the demands in front of them — MemoryWell has produced about 1,500 life stories since its start .
Some families sign up themselves, some senior homes employ MemoryWell’s services and several providers reimburse the cost for dementia or hospice patients as part of patients’ care. Costs range from $75 to $300, depending on the level of time and research required.
In the early days, Newton-Small wrote the life stories herself. One of the first stories Newton-Small wrote was the mini biography of a retired accountant in an assisted living facility in Iowa who was behaving erratically. Three times a day, an old-fashioned chow bell rang to alert people in the community that food was ready. Whenever that bell rang, the man started accosting people and the staff was at the point of thinking they needed to kick him out. “They tried everything to calm him down, drugs, etcetera, you name it,” Newton-Small says. “Through my writing his life story, they realized he had been a lifelong volunteer firefighter. The bell sounded like the bell in the firehouse and he was trying to evacuate people. They changed the bell to a chime and he was totally fine.”
Newton-Small is convinced that the narrative is crucial, and the details that matter are usually quite different from the medical information. “We don’t need to put the date of birth or other information people would want to steal, but it is okay for them to know that a resident loved to pick daisies when she was a little girl, had a cat named Daisy and became a florist.” A separate sheet just for caregivers might inform them about trauma triggers that are too sensitive to publish.
Senior homes find that the patients and families enjoy telling their memories, and that the initiative helps to provide better care, establish closer relationships between caregivers and clients, and surprisingly, lower staff turnover.
Deirdre Heersink heard about MemoryWell when the platform received the Breakthrough Award. As the medical director of Gray Birch in Maine, a senior living facility with 138 residents, she was looking to improve care in the midst of the pandemic.
Staff turnover was 400 percent that year, caregivers were aching under the protective COVID gear, and the rotating staff and the masks made caregiving even less personal. “Patients couldn’t have visitors and the isolation took a great toll,” Heersink recalls.
Heersink wrote the first five client biographies herself with the help of MemoryWell and was so surprised by the “remarkable” changes they prompted that she found funding for 45 resident biographies.
One resident in a wheelchair had been a successful race car driver and posting the photo of him next to his race car made the staff realize what a daredevil he had been. “Because of the story they understand him better, so I don’t need to try to constantly explain who he is, and the things that he has done, to the staff,” his sister said.
One hundred percent of staff at Gray Birch said it improved the quality of work, and an overwhelming majority of patients and their families reported back that they felt care improved. “You get a whole picture of them as a person versus just a bunch of medical diagnoses,” one therapist said.
“When you ask caregivers why they’re doing this work they’ll tell you it’s all about relationships and connection,” Heersink says. “But it’s also the first thing that gets lost.” She believes humanizing the residents is at the core: “When people are invested in the people they’re caring for, they go the extra mile for them.”
This story was originally published by Reasons To Be Cheerful, a nonprofit editorial project that strives to be a tonic for tumultuous times.
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