Published November 30, 2017 by Rebecca Goldfine

Students Write Down the Stories of People with Memory Challenges

Over the course of the fall semester, more than a dozen Bowdoin students met regularly with elderly people to hear them talk about their lives. They listened to stories of what it was like to grow up during World War II and of how they met their spouses. They heard tales of weddings, children, moving and setting up new homes, of moments both joyful and sad.

The students were part of a new initiative at Bowdoin to help preserve the personal stories of local people who are starting to experience memory loss, to write down their memories before they are forgotten.

ava_alexander
Ava Alexander ’18 with Rosemary Brigham, who is holding the volume that Alexander wrote of Brigham’s stories

The Legacy Storytellers program is overseen by the Maine chapter of the national Alzheimer’s Association. For the past several years, the organization each fall has partnered with a growing number of Maine colleges and universities to train college students to become the biographers of someone who is in the early stages of a memory disease, such as Alzheimer’s or another kind of dementia. The Highlands — a retirement community in Topsham — and Brunswick Area Respite Care are local partners in the project, helping identify community members who might like to participate.

Participants recount stories from their lives — from their childhoods to late adulthood, as well as life lessons learned — while two students listen: one to ask questions and the other to take notes. Later, one of the students writes up the stories, presenting them at the end of the project to the participant and their family.

Darlene Ineza ’19 and Ava Alexander ’18 were among the fourteen students who volunteered for the fall program. They were paired with a British woman and her partner, Rosemary and Gordon Brigham, who both live in Topsham. Partners or caretakers are always present during the sessions; often they are helpful in recalling lost details.

“It was so much fun,” Ineza said, describing how listening to Rosemary talk about hiding in a WWII bunker in London during air raids seemed to her so extraordinary and strange. Ineza, who is from Rwanda, also said she and Rosemary connected over being foreigners living in Maine.

Alexander wrote the final twelve- to thirteen-page document of Rosemary’s life, including in the document old photos the Brighams sent her. One of the anecdotes in the volume recounts how Rosemary, who had arrived in the US after WWII, made a cross-country road trip with her cat and a friend. She lived an adventurous and rather uncommon life, and didn’t get married until she was 47, when she met Gordon.

At a recent party for the participants and students, held at a nearby church, Rosemary said the  storytelling experience had been the highlight of the autumn. “We live a quiet life, and this has been a wonderful spark,” she said. As she paged through the volume Alexander had given her, she exclaimed at a photo of herself and her father at her wedding. She was wearing a pink and blue dress. “You should have worn that dress today!” Gordon suggested. “Oh, I wouldn’t be able to fit in it! But thank you,” Rosemary replied. She looked at Alexander and said, “This is so touching, I can’t believe it.”

darlene_ineza
Darlene Ineza ’19, with the volume she wrote for another participant

Miranda Dils ’19 helped facilitate the program this semester, taking on the volunteer role because she said she values spending time with older people. “My grandparents were a big part of my life, I spent so much time with them,” she added. “Older people in my life have been so important.”

Ineza said she had initially signed up for the program to not only “give back to someone’s life in a fun way,” but also to gain experience working with people with memory disorders. She wants to go to medical school to become a physician. “I want to familiarize myself with people from different backgrounds and ages than me, to better relate to them,” she said.

Mark Pechenik, the manager of community engagement and outreach for Maine’s Alzheimer Association chapter, said many of the college students who sign up for Legacy Storytellers are interested in medical careers. “This is an invaluable opportunity,” he said. “They are communicating with and interacting with someone who has symptoms of a [memory disorder].”

Meanwhile, for the participants with memory loss, the socially engaging experience not only helps them safeguard their life stories, but also “puts them in the unique role of teachers as they help students to better understand dementia and memory challenges. This, in turn, can empower participants, enhancing their quality of life,” Pechenik said. In addition to programs like Legacy Storytellers, the Alzheimer’s Association’s services include care consultations and support groups to assist those living with dementia and their care partners.

Alexander said she wanted to participate in the storytelling program because she remembers how her family struggled with her great-grandmother’s Alzheimer’s disease. Plus, she added, she likes to write. And as a psychology major, she is interested in public health or going to graduate school for psychology. She enjoyed getting to know the Brighams and hearing their stories. “It’s interesting to see which memories stick out,” she mused. “As you lose things, what sticks, what remains, these indicate what is important.”