Tom and his wife, Sharon, sit in a conference room of the nursing home where he lives. This is an eventful day for them—they are about to record the story of their lives together.
A few weeks earlier, Tom—who has Alzheimer's disease—had been asked by the activities director to participate in StoryCorps, an oral history project. It seemed like a great idea—to capture memories of Tom and Sharon's life together before Tom's illness erases them. To Sharon, the 40-minute interview seems like a challenge, but one she is willing to take on for the opportunity to have a CD to listen to and distribute to family. She is excited but a little concerned about Tom's ability to remember their story. She wonders if he will focus long enough to complete the recording—StoryCorps is here only today, and she doesn't know if Tom's day will be good or bad.
Sharon has prepared a list of 10 interview questions ("How did you feel when we first met? How has your Alzheimer's disease affected our life together?"). A StoryCorps representative facilitates the interview. In the six interviews scheduled in the nursing home today, residents—all of whom have memory loss—will be interviewed by spouses, children, or grandchildren; one resident is being interviewed by a staff nurse.
The facilitator puts on headphones, tests the recording equipment, and pushes some buttons on the digital recorder. When the microphones are in place, Sharon and Tom begin the conversation of a lifetime.
StoryCorps is a national nonprofit organization that records and collects stories of everyday people. StoryCorps was created in 2003 as an independent nonprofit to give Americans of all backgrounds and beliefs the opportunity to record, share, and preserve their histories; it has collected and archived more than 30,000 interviews from more than 60,000 participants.
StoryCorps added its Memory Loss Initiative (MLI) in 2006 to help people with various forms of memory loss share their stories with loved ones and future generations. It has collected more than 1,800 interviews—such as Sharon and Tom's—through 180 partner organizations.
MLI participants reminisce by taking a walk down memory lane. StoryCorps and MLI have developed an interview and recording process, an individualized form of reminiscence that aligns with principles that improve living. The approach allows people living with dementia, age-related memory decline, or other acquired memory deficits to feel value in their lives and to preserve their story, history, and memories before they fade.
A more recent addition to MLI—the Commemorate project—is bringing the interview process to even more participants by providing an easily replicable do-it-yourself guide to planning and recording the reminiscences of people with memory deficits that can be used by speech-language pathologists, occupational and physical therapists, and other caregivers.
Benefits and Logistics
Reminiscing can improve quality of life. It increases communication and social interaction in at-risk populations. The mental health of those suffering from memory loss improves with reminiscence (Tappen, 2009). Interactions that revolve around reminiscing are not based on performance, but engage and foster self-value through meaningful and purposeful activity (Armstrong & Wright, 2002; Train, 2005; Harner, 2008).
MLI establishes organizational partnerships with those providing services to clients with memory loss, such as skilled nursing and assisted living facilities. StoryCorps provides equipment, on-site staff, and pre-interview preparation materials. Partner facilities identify participants, arrange an interview schedule, and handle questions and logistics prior to recording day. On recording day, StoryCorps staff arrive at partner locations with microphones, digital recorders, and headphones. Although free to participants, the cost of each interview is approximately $250.
Many factors can affect the outcome of the recording. For example, the person being interviewed may have attention deficits, need more than the allotted 40 minutes, or struggle to remember on that particular day. Given these challenges, the StoryCorps team decided they needed a new approach that involved clinical input when working with this population.
As an SLP specializing in geriatrics, I am very familiar with cognitive-linguistic decline, and I knew that StoryCorps' intimate and personal approach to reminiscing would be relevant for my clients and practice. I know the many struggles of this population; one challenge particularly difficult to witness is older adults' omnipresent fear of the future. Uncertainty about tomorrow creates a strong need to connect today, but making those connections can be difficult, and families and caregivers feel helpless. Despite their desire for closeness, they find their interactions fading.
I began to use StoryCorps audio clips in seminars I teach for medical professionals and I found that SLPs, occupational therapists, physical therapists, nurses, psychologists, and recreation therapists were very interested in helping their patients participate in this type of project.
StoryCorps wanted to bring the MLI approach to more people by teaching caregivers individualized communication strategies for those with impaired thinking and recall. According to the National Institutes of Health, more than 4 million Americans suffer from memory loss associated with Alzheimer's-type dementia alone; StoryCorps was touching only a small percentage of those who could benefit from the program. StoryCorps wanted a professional in cognitive communication and memory loss to help develop the program, and I began working on it in the summer of 2010.
I knew that a do-it-yourself model could have an enormous impact for the entire memory loss community. We gathered resources, developed tools, and devised practical strategies to help put the do-it-yourself interview process into action. We developed Commemorate, a guide that puts the StoryCorps approach in professionals' and caregivers' hands, thereby giving more people the tools to use StoryCorps' processes with individuals with cognitive-linguistic deficits.
I tried the tips we suggested, tested the questions, talked, and recorded. Every interview evoked my emotions, as well as those of my storytellers and caregivers with whom I shared the stories.
Using the Guide
When I used Commemorate to interview one of my patients, Shirley Cromer, she was reluctant at first, unsure why anyone would want to hear about her life, and told me I should look for someone "more important." I gave her information about StoryCorps, and we worked together to select questions that were most meaningful to her. She realized that this was her story to tell. She told me about her life, and even the more difficult pieces brought a smile to her face. I was moved as she sang a favorite hymn, and she concluded the conversation by telling me she loved me.
My patients were more engaged than ever. They shared and I learned by listening. The StoryCorps process became a bridge for connecting the past with the present moment, and even if only for that time, feelings of happiness and gratitude replaced my patients' fears of losing memory and thinking skills. My patients feel joy and honor when being interviewed, as the process offers a moment in which they feel very connected. Families are grateful for the opportunity to have a shared moment with their loved ones, and caregivers learn from listening.
Commemorate brings the StoryCorps experience to thousands of new individuals and organizations. The StoryCorps-style interview is easily duplicated, with a free do-it-yourself program. Commemorate details a step-by-step method for reminiscing and recording and provides story samples, suggests equipment for every budget, outlines the necessary set-up for a high-quality audio recording, and gives guidance for the most effective communication strategies. A professional is not required to complete the interview.
Facilities can use this tool to develop sustainable and extendable person-centered care programs. People who have participated in StoryCorps interviews said they felt a sense of pride, closeness with their loved ones, and happiness after the experience. They also said they became aware of the beauty in the present moment and appreciated the communication avenues that opened as a result of the conversation.
Jodi Miller McEdward and Ann Leslie Miller of Madera, Calif., interviewed their 98-year-old grandfather. After completing the interview and listening to the recording at his nursing home, Miller said, "This past year has seen a rapid decline in his physical abilities and some problems with his memory. What was so precious is that each day, he would proudly announce to his friends and ‘home-mates' that he was being interviewed by his family. I was witness to a true ripple effect of this oral history process that was completely unexpected. His statement would create conversation and questions from guests at the table, the young serving staff, and visitors."
My hope is that with Commemorate, clinicians and caregiving professionals will find a way to incorporate StoryCorps' thoughtful and intimate form of reminiscence into their care of people struggling with memory. Read the guide and listen to the clips. Interview, record, and listen to those whose memories are fading. The daughter of an MLI participant in New York City expressed it best: "Doing this interview meant so much. It validated his life and the impact he has on everybody around him."