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How storytelling can help dementia patients

December 18, 2016

Tags: Dementia, Alzheimer's

Updated 8-24-17. This former journalist helps caregivers get to know who their patients once were, before dementia took hold (Tara Bahrampour, The Age, 12-16-16) Jay Newton-Small, a District resident, started a business writing anecdote-filled profiles of dementia patients after her father got Alzheimer’s. '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.”'
How Storytelling Can Improve the Care of People With Alzheimer's (A-1, WUWM and NPR, 7-13-17) Jay Newton-Small, CEO and co-founder of Memory Well, coordinates a network of journalists who tell the stories of people who can’t tell their own, helping caregivers understand them and improve their quality of life. Here she shares the radio stage with Jill Lesser, president of Women Against Alzheimer's; Andrew Kazmierczak executive director of St. Paul's House, a senior living community with care and residential facilities, in Chicago; and Emily Lenzner, whose father has dementia and is in a care facility in Washington, DC.
Shopping for Antiques, Finding My Mother (Healther Sellers, Opinionator, NY Times, 5-14-15) About the power of objects to help us hold on...."The whole time I’d grown up with her, and long after, she’d desperately worried that people were trying to take her things....She scattered photographs, destroyed my father’s 1950s love letters to her, gave away her lovely kitchen things and then called me, wondering where they had gone. Alzheimer’s took her memory, and she lost everything...."
Alzheimer's: Mementos help preserve memories (Mayo Clinic)
Memory Café opens for couples dealing with Alzheimer's (Alzheimers Reading Room)
Alzheimer's Patients Turn To Stories Instead Of Memories (Joanne Silberner, Treatment/Shots, NPR, 5-14-12) "Linda White is leading a session based on a program called TimeSlips. The idea is to show photos to people with memory loss, and get them to imagine what's going on — not to try to remember anything, but to make up a story. She started work on storytelling as a way to give people with dementia a low-stress way to communicate, one that did not rely on their memories. She sees it as giving caregivers a chance to reconnect with their loved ones....One study co-authored by Basting in The Gerontologist, a journal, found that storytelling made people more engaged and alert, and that staff members at residential facilities had more positive views of their patients.
Reel life: the biographical films bringing joy to people with dementia (Juliette Jowit, The Guardian, 5-31-17) Jo is watching her own life story on television. See how she reacts. My Life Films combine music, photos, clips and interviews to celebrate the lives of those with dementia – and help carers build better patient relationships. “There is nothing positive about dementia, [but] in a way we bring a little bit of good into their lives, it’s a celebration,” says Jorg Roth, who set up the UK charity with his wife Carolin. “I talked to a gerontologist friend: I thought it was the entertainment value; she said no, it’s the journey, it’s the interest we show in somebody, it’s family coming together.”
‘Storycare’ should be an essential part of health care (Dan Yashinsky,, TheStar.com, 6-2-17) "Storycare means creating times and places in the hospital for people to tell, hear, imagine, and remember stories. For people with dementia, storytelling sparks rich and imaginative responses, even from those who have forgotten the names of their loved ones. For psychiatry patients being treated for severe depression, wondertales full of breathtaking suspense can help them regain their desire to discover what happens next — in the story, and in their own lives. In the palliative unit, I listen to life-stories, share tales of wisdom from around the world, and we laugh, too, despite the solemn setting."
Forget Memory:Creating Better Lives for People with Dementia, by Anne Davis Basting. A powerful antidote to the notion that memory loss = loss of identity, and a reminder that people with dementia lead better lives when they can express themselves and feel heard. You need better ways to help them than asking questions that require a good memory to respond.
Forget Memory:Creating Better Lives for People with Dementia by Anne Davis Basting. A powerful antidote to the notion that memory loss = loss of identity, and a reminder that people with dementia lead better lives when they can express themselves and feel heard. You need better ways to help them than asking questions that require a good memory to respond.
What People With Dementia Can Teach Us About the Arts (Heidi Raschke, Next Avenue, 9-23-16). A MacArthur "Genius" (Anne Basting) shows how storytelling can change how we age and perceive aging.
Alzheimer’s Patients Keep the Spark Alive by Sharing Stories (Jane E. Brody, Well, NY Times, 8-8-16) "An unusual eight-week storytelling workshop at Northwestern University that is helping to keep the spark of love alive in couples coping with the challenges of encroaching dementia. Every week participants are given a specific assignment to write a brief story about events in their lives that they then share with others in the group. The program culminates with a moving, often funny, 20-minute written story read alternately by the partners in each couple in front of an audience. Each couple’s story serves as a reminder of both the good and challenging times they have shared, experiences both poignant and humorous that reveal inner strength, resilience and love and appreciation for one another that can be easily forgotten when confronted by a frightening, progressive neurological disease like Alzheimer’s."
The Service Learning Experience: How Storytelling Evolves in People with Alzheimer's and Dementia and Why This Is Important to the Creative Writing Student and the Community (PDF, Alice M. Spicer, Thesis, 2013) "Perhaps, just as the blind significantly outperform the sighted in tactile experiments, there are some forms of creativity in storytelling in which people with Alzheimer’s and dementia may demonstrate more ability than their fully cognizant peers."
Since APH's demise, the following piece is not online. I've Sue Hessel if she'll post it again. Meanwhile, the message is still good.
Do You Know Me? It's Still Me (Sue Hessel, APH blog, 3-13-13), on helping dementia patients find and save their stories--and on helping caregivers see them as individuals and not their disease.

Comments

  1. August 24, 2017 8:30 PM EDT
    Steve Taravella forwarded this link to Memory Well
    https://www.memorywell.com/
    Improving care one story at a time
    "Person-centered care starts with a story. Our journalists tell the stories of people who can't tell their own, helping caregivers understand them and improve their quality of life."
    - PM