Diversifying the Story of Dementia

VOW’s Residency at the UCSF Memory and Aging Center

Photo: Courtesy of UCSF MAC

We are excited to share that Voice of Witness is the 2015-2016 Hellman Artist in Residence at the University of California San Francisco’s Memory and Aging Center (MAC). The unique Hellman Visiting Artist Program was created to foster dialogue between scientists, caregivers, patients, clinicians, and the public regarding creativity and the brain.

Through this collaboration, our education team is offering oral history trainings and workshops with the doctors, nurses, faculty, and staff at MAC, preparing them for interviews they will conduct with each other, with dementia patients, and with patients’ family members and caregivers. Ultimately, this partnership will culminate in the publication of a book of stories about dementia and about MAC from many different voices and perspectives.

Doctors, nurses, students, and staff during VOW’s first visit to UCSF MAC

This Spring, our residency at MAC really took off.

In March, Cliff and I facilitated two workshops with the MAC doctors, nurses, faculty, and staff to introduce Voice of Witness methodology and best practices around interviewing and editing, as well as to explore some of the essential questions that emerge when practicing oral history.

Together, we talked about techniques and skills to use when asking people difficult questions and how to navigate power dynamics within an oral history interview. We also talked through how to best honor narrators through editorial choices, and considered how some of our approaches might be tweaked when interviewing narrators with dementia. We were really inspired to have so many knowledgeable and committed people in the room!

Cliff at UCSF MAC
Education Program Director Cliff Mayotte introducing Voice of Witness

In April, Cliff and I each spent an afternoon observing a team conference in the MAC clinic. In each of these conferences, doctors, nurses, and counselors gathered to discuss a patient’s case in detail, covering all facets of the patient’s life, from family medical history to social life to neuropsych test results.

Before the MAC staff brought the patient into the room, we looked at the patient’s brain scans to see how the areas of the brain affected by dementia corresponded to the theories developed through analyzing test results, behavior patterns, and personal and family history.

The attending doctor then interviewed the patient, allowing Cliff and me to really observe the MAC team in action. Sitting in on these team conferences helped us to better understand the specific population of people with whom MAC works, and gave us insight as to how oral history training and approaches can best be tailored to meet both the patients’ and the MAC faculty and staff’s needs.

UCSF MAC Workshop_2
Talking through how to transcribe and edit oral history transcripts (Left to right: Allisa Bernstein, Nick Olney, Caroline Prioleau, Jennifer Merrilees)

Interviews are now underway. Everyone at MAC—doctors, nurses, patients, patients’ caretakers and family members, counselors, faculty, and staff—has the opportunity to be both an interviewer and a narrator. We’re so excited to see these oral histories take shape.

This has been such an exciting partnership for the Voice of Witness Education Program. We’re learning so much from the people at MAC, and have really enjoyed doing oral history in an environment so new to us. We can’t wait to celebrate the collection of diverse voices and perspectives from everyone at MAC!

Stay tuned for updates and excerpts!

—Claire Kiefer, Education Program Associate

Learn more about the Hellman Visiting Artist Program here.

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