Commemorating people with Alzheimer's disease: The Story Corps memory loss initiativeOctober 1, 2009
The room is comfortable and softly lit. A woman and older man sit facing each other at a small table. A third person performs a sound check and adjusts the participants’ microphones. She shares reminders for the session: This conversation is only for the two of you; it’s meant to serve as a snapshot of your relationship; there is no right way to do this. Shortly, the facilitator signals to the woman, who nods and begins the interview. “Tell me about your childhood, Dad. What was it like growing up in Nebraska?” “Well,” the man says, “I was born on the family farm, the youngest of six. Momma said a neighbor lady—a real old-school pioneer who still lived in a Soddy—came to help out. You know, all birthing was natural in those days. Momma said I was a difficult boy right from the start!” The two share a laugh.
Many people seek to capture the precious memories, thoughts, and feelings of important people in their lives. When a person has Alzheimer’s disease though, the task becomes much more urgent. In 2006, a project called the StoryCorps Memory Loss Initiative (MLI) was launched to support and encourage caregivers, families, and people with memory loss or Alzheimer’s disease to share their life stories, in a way that can be remembered.
What Is the Memory Loss Initiative?
The MLI is a project of StoryCorps, a nonprofit organization whose mission is to honor and celebrate people’s lives through listening. A permanent staff at StoryCorps maintains the MLI. An Advisory Board of nationally recognized leaders in the field of memory loss and Alzheimer’s disease, including representatives from NIA-supported Alzheimer’s Disease Centers (ADCs) and other organizations, guides the project.
The MLI makes it possible to record a conversation between an interviewer—usually a family member or friend—and a person with memory loss or Alzheimer’s disease. Alzheimer’s in particular makes it difficult for a person to remember the details of his or her life. The interview process is not designed to test memory but to facilitate a natural conversation between two people who care for each other. Participants are encouraged to think of the interview as a celebration of a person’s life, through his or her own words.
Dina Zempsky, the StoryCorps MLI Senior Coordinator, comments:
“The StoryCorps Memory Loss Initiative is a special program as it allows people with Alzheimer's to do something joyful and normative; recount their long-term memories. Caregivers and family members have a beautiful radio-quality CD to listen to over and over. It is a gift for all!”
How It Works
StoryCorps conducts sessions at two main studios in New York City and San Francisco and via two MobileBooths—Airstream trailers outfitted with recording studios—that travel the country year-round. It also conducts sessions at appropriate community locations. Organizations, institutions, and groups can sponsor on-site recording. In addition, StoryCorps provides the Do-It-Yourself Instruction Guide—a free downloadable reference for recording and archiving stories at home, in the classroom, or at a library.
Each 40-minute interview is recorded in a controlled setting to eliminate distractions. Specially trained staff members serve as facilitators to help ensure that participants have a comfortable, meaningful experience. Anyone—a family member, a friend, or a caregiver—can be the interviewer. After the session, participants receive a free CD of their interview to take home and freely copy for family and friends.
With participants’ permission, StoryCorps arranges for their recorded conversations to be archived at the Library of Congress. Selected interviews are broadcast on National Public Radio’s Morning Edition and can be heard on the Web. StoryCorps activities also can be followed on Facebook and Twitter. Videos may be viewed on YouTube, including excerpts from interviews with both caregivers and people with Alzheimer’s. StoryCorps offers a book and CD for sale, containing selected interviews from its collection. All of the proceeds go to support StoryCorps.
An Opportunity for Organizations and Groups
Through the MLI, StoryCorps collaborates with community partners—organizations and groups who work with those affected by memory loss and Alzheimer’s disease. Staff members bring their portable equipment to a community location and record up to six 40-minute interviews per day. As part of the MLI, all fees are waived. Individuals also can record at home through the StoryKit program. The fees for the kit also are waived for participants in the MLI.
Dr. Nina Silverberg, Assistant Director of the NIA Alzheimer’s Disease Centers Program, says, “Every time I hear StoryCorps on NPR (which is fairly often), I think of what a great project this would be for an ADC or the family of an Alzheimer’s patient.” A number of ADCs already have taken advantage of this service, including those at Duke University, Rush University, and the University of California, San Diego (see UCSD Currents, page 5).
Lisa Gwyther, a member of the Advisory Board and education director of the Bryan Alzheimer’s Disease Research Center at Duke, adds:
“The Memory Loss Initiative is a celebration of what matters most, the oral history and ties that connect people at risk for feeling disconnected. Participants in the Bryan Alzheimer’s Disease Research Center Memory Loss Initiative expressed immediate pleasure and purpose both in being heard and in creating this unique legacy for their families and for the national archive. The 20th annual Bryan Alzheimer’s conference opened with an audiotape of the first Memory Loss Initiative stories to air on NPR. Their rich warmth and humor set a positive tone for the conference.”
National Day of Listening
Recently, StoryCorps sponsored a National Day of Listening. The project invited people “to celebrate and document the stories, memories, and history of your family, friends, and community…to ask the questions that matter, and record your conversations to enjoy for years to come.” Individuals and families can visit the site to see how they might participate. Further, educators and librarians can receive free resources for classrooms, libraries, and groups, such as those dealing with Alzheimer’s disease.
Page last updated: February 26, 2015