Jan/Feb 2008

Listening as an Act of Love — Story Corps’ Memory Loss Initiative
By David Surface
Social Work Today
Vol. 8 No. 1 P. 18

A special project reaches out to those whose stories deserve to be heard despite the erosive effects of memory loss.

In many cultures, elders are the storykeepers. Recording tales that exist only in the memory of the storyteller has been a goal of folklorists and anthropologists for many decades. But with the growth of Alzheimer’s disease, the effort to preserve the stories of our older population has become a different kind of race against time, one in which the memories are in danger of disappearing long before the storyteller.

Preserving the life experiences of our aging population is the goal of Story Corps’ Memory Loss Initiative. Story Corps is the brainchild of MacArthur Fellow David Isay, whose award-winning documentary company, Sound Portraits Productions, makes audio recordings of Americans telling their personal stories.

In true documentary style, Story Corps collects people’s stories by finding them where they live and work. In October 2003, busy New Yorkers passing near Track 14 in Grand Central Station saw the appearance of a strange-looking orange structure bearing the message “Listening is an Act of Love.” This was Story Corps’ first StoryBooth, a compact recording facility where the stories of thousands of people have been documented in sound. A second booth opened at the World Trade Center site in July 2005 and a third one at Foley Square in 2007 when the World Trade Center booth was closed due to construction.

The Story Corps approach is simple and effective. A person who has agreed to be interviewed comes to a StoryBooth accompanied by a friend or relative who will do the actual interviewing. A Story Corps facilitator provides tips for the interviewer and manages the technical aspects of the recording. Afterward, the participants are provided with a CD of the interview, a copy of which is also sent to the Library of Congress for archiving. Excerpts from interviews are produced for radio broadcast as well.

While Story Corps began by collecting the stories of young and old alike, repeatedly it was elders whose relatives and caregivers brought them in to record their memories—stories of first jobs and first loves, weddings and childbirths, sad and funny stories that had been told many times or never before. While many people were driven by the desire to preserve their aging relatives’ stories while they were still alive, others may have been motivated by another kind of loss, the inevitable erosion of their loved ones’ ability to remember and share the important events of their lives.

Recognizing the importance of preserving the stories of this growing population, Story Corps launched the Memory Loss Initiative in 2006, focusing entirely on recording and archiving the stories of people with Alzheimer’s and other forms of age-related memory loss.

Story Corps initially thought the Memory Loss Initiative could be managed from their regular outreach department but soon realized the program would best be served by someone familiar with this population’s special needs. About six months after the program started, Dina Zempsky, MSW, who specializes in work with the aging, was brought on-board as the first director of the Memory Loss Initiative.

Sitting in a sun-washed conference room on the second floor of Story Corps’ sparse, attractive offices on Hanson Place in Brooklyn, Zempsky projects the quiet enthusiasm of someone who has found her mission in life. “What I saw again and again was how excited people are just to feel listened to because they aren’t getting it in whatever their life situation is,” she says. “Just during those 40 minutes from the beginning to the end of the interview, you can see the change in people who come away feeling better about being able to look back on their life and feel good knowing that it’s going to remain part of history. It’s really comforting, especially for those people who know that their memory might be lost. They’re extremely thankful. And that makes it a very rich experience to be part of.

“Prior to this initiative we didn’t keep statistics on this population,” she adds, “and in many ways, we still don’t because unless someone self-identifies or comes in through one of our special partnerships, we have no way of identifying whether or not they have memory loss. I’m sure that Story Corps has interviewed thousands of people with memory loss issues. They just haven’t been characterized as such.”

Reaching Out
Mitra Bonshahi, outreach coordinator for the Memory Loss Initiative, shares Zempsky’s conviction that the initiative is a natural outgrowth of Story Corps’ mission. “What we’re trying to do with Story Corps is capture the voices that aren’t heard,” says Bonshahi. “And many times, it’s the aged population that isn’t heard.”

Bonshahi seeks out and develops partnerships with a variety of organizations serving older adults with memory loss, including nursing homes, Alzheimer’s organizations, and geriatric medical centers. Bonshahi explains the mission of Story Corps and the Memory Loss Initiative to these organizations who then reach out to their clients or residents.

“It’s usually the caregiver or family member who contacts us,” Bonshahi explains. “Most often, we work with people in the early or middle stages of Alzheimer’s. We don’t usually work with people in their late stages because it’s difficult for them to speak or tell their story.”

While reaching out to the participants’ caregivers during the early stages of the process, the facilitators must identify the person with the power of attorney to sign the consent forms necessary for archiving the interview at the Library of Congress and broadcasting segments on the radio. If that person cannot be identified or contacted and consent forms cannot be signed, the participant and their family are still given a CD recording of the interview, but it can’t be archived or produced for broadcast. However, this is typically the exception.

Taking It Door-to-Door
Relatively few, if any, of the interviews take place at Story Corps’ booth in Grand Central Station. Zempsky and her colleagues have found that people with Alzheimer’s—like most people—give better interviews in a familiar setting where they feel comfortable.

According to Bonshahi, approximately 95% of the interviews done for the Memory Loss Initiative take place on site at nursing homes and Alzheimer’s conferences. Conducting the interviews in a familiar setting helps reduce anxiety among the interviewees. Zempsky describes the atmosphere at those remote sessions as one of celebration. “When we go to a nursing home,” says Zempsky, “it’s like when the circus comes to town. It’s such a joyful process.”

Conducting the on-site interviews for the initiative involves a great deal of preparation. An inevitable part of that preparation—paperwork—can pose a special challenge.

“We ask participants to fill out their name and birthday on our date forms, but many times participants can’t remember those things,” Bonshahi explains, “So one of the things we had to figure out during the learning process was how to be sensitive to that person but still gather that information.”

While the actual interview takes only 40 minutes, the facilitators schedule 1 hour to accommodate participants using wheelchairs and walkers and for the time needed to complete the necessary paperwork.

Finding Facilitators
It takes a person with specific abilities to interview an older adult with memory loss. The barriers that must be overcome in another type of interview may be emotional or cultural, but the challenges faced by someone interviewing an older adult with memory loss require a certain patience and flexibility that can be hard to find.

Story Corps facilitators attend a class in which they become familiar with its mission and are trained in special interview techniques. However, there is no special separate training class for facilitators who go on to work with the Memory Loss Initiative. Instead, Zempsky observes the new facilitators in the class and in the field, looking for certain key abilities.

“It’s really exciting to find someone in our facilitators’ class with a proclivity for the elders because I think that springs organically,” says Zempsky. “You can’t fake that.” She recalls one morning at the Lennox Hill Neighborhood Association when she first noticed Bonshahi conducting interviews with elders. “The other facilitators were clearly struggling with the pace of the day. Everything was so slowed down. I noticed immediately that Mitra was really attuned to it.”

One of the few times that the facilitators interviewed a person in the late stages of Alzheimer’s provided Bonshahi with one of her most moving memories of the project. “I was working with someone in the late stages of Alzheimer’s, and he was unable to sit down in his chair. He’d forgotten how, and his caregiver had to show him how to do it,” Bonshahi remembers. “I wondered how this interview was going to go. But the wonderful thing about it was that although he could only respond to what his wife was saying, he was still there with her. It was really beautiful. At one point she asked him if he remembered what they had done on their honeymoon, and he said, ‘We were on a boat’, and her eyes just lit up. For her to know that he still had the ability to remember special events in their life was pretty wonderful. And they walked away, both of them, just as happy as can be.”

Interview Techniques
Arriving at the best techniques for conducting and gathering the interviews for the Memory Loss Initiative has been a learning process. Central to these techniques is a commitment to staying in the moment and being responsive to where the interviewee’s memories take them.

While people with Alzheimer’s and other forms of memory loss may appear to ramble or digress during interviews, Zempsky realizes the significance of the stories that participants choose to share. “What we know about the disease of Alzheimer’s is that memories that remain intact are usually very significant memories,” she explains.

“We find that people still have that narrative capability,” says Bonshahi. “They may have some difficulty initially, but once they get going and the person interviewing them goes with them, it’s pretty much like any other Story Corps interview. We find that people love being listened to. They love being given a quiet space in which to tell their stories.”

Some participants, perhaps driven by the notion of preserving their family history, often recite facts and dates. Although these are not the kind of family stories Bonshahi and her colleagues are out to collect, they don’t discourage them. “Sometimes people do just want to go through their genealogy or tell us their family history,” says Bonshahi. “In Story Corps, people are allowed to tell us about whatever they want.”

While the facilitators work hard to provide a positive experience for their interview subjects, they also make no conscious attempt to avoid eliciting negative or painful memories or stories.

Looking Ahead
Although Zempsky insists that the Memory Loss Initiative is primarily an artistic project and not a clinical one, she still sees great clinical and therapeutic potential for the initiative, one that remains to be explored. Apart from the interview process itself, Zempsky believes it’s the CD recording of the interview that may have the greatest untapped clinical potential.

“When we were in Chicago, the social worker was going to have her participants bring their CDs back to a support group and share them that way,” Zempsky says. “Here at the Alzheimer’s Association in New York, they’re starting to do that as well. I think there are clinical pieces of this that haven’t been explored. We suggest that this is something social workers can do.”

Another possible direction for the initiative’s future is working with people with other forms of memory loss, such as people with brain injury. “We’re in the process of researching people who we could reach out to, not always focusing on people with Alzheimer’s and dementia,” says Bonshahi. “We will be doing one door-to-door in Seattle with people with brain injury, where the age range will be 18 to 60.”

“There are a lot of places we’d like to go,” says Zempsky. “I think it would be fun to go to Alaska. Believe it or not, we haven’t been to Florida yet. We’re going to be at the L.A. Alzheimer’s conference soon. They’re doing their first conference on people with early-stage Alzheimer’s, and we’ll have one of our recording booths there.”

A Wider Purpose
Ultimately, the Memory Loss Initiative’s potential as a tool for raising public awareness may be its most important legacy.

“What’s exciting to me is our ability to get these clips broadcast on the radio and heighten awareness in this country of this very quiet population that is expanding by leaps and bounds, that I think we’re all in a lot of denial about,” says Zempsky. “The fact is that the first baby boomers are turning 60, and that 50% of the population over 80 have Alzheimer’s. So what are we looking at in 20 years?”

While Zempsky emphasizes that Story Corps does not have a political agenda, she remains optimistic about the potential impact this project may have on our society.

“I think the more publicity we can get out there, the more research can be done, the more people can understand the ramifications of the limited coverage we have under Medicare for elders,” Zempsky says. “For the past eight years we’ve been able to do very limited stem cell research, so we’re in kind of a race at this point. But if we can promote this initiative and remind people that many elders are suffering from this disease, that would be wonderful.”

— David Surface is a freelance writer and editor based in Brooklyn, NY. He is a frequent contributor to Social Work Today.