Partnership in Action: UCSF Memory & Aging Center

Stories on Aging and Dementia

hear/say cover – stories of aging and dementia

The Hear/say project is a multi-year, ongoing collaboration between the University of California, San Francisco Memory and Aging Center (MAC) and Voice of Witness, organized around a series of trainings and the collection of powerful, first-person stories about aging and dementia.

In 2015, MAC invited Voice of Witness to be the visiting artist through their Hellman Visiting Artist Program, which was created to foster dialogue about creativity and the brain among scientists, caregivers, patients, clinicians and the public. In this role, Voice of Witness set out to collaborate with people from every facet of MAC, using the oral history process to explore diverse lived experiences and amplify the many unheard stories around their campus and beyond.

Voice of Witness conducted several ethics-driven oral history trainings and numerous work sessions devoted to interviewing, storytelling, editing, and book production. Through the work of many interviewers and narrators in the MAC community, we were able to collect and listen to stories that reflected the day-to-day realities of aging, Alzheimer’s, and dementia. The stories emphasize the multi-dimensional nature of people’s experiences, moving away from defining people by a single role they play in their own lives and giving the whole person space to be seen.

The stories we collected now live within the hear/say book, a living, breathing collection of first-person testimonies that is sure to resonate with anyone whose life has been impacted by dementia in some way.  Order hear/say Vol. 1 here. This launched a long-term partnership between VOW and the MAC.

A Second Volume of hear/say Stories
hear/say cover volume two – stories of aging and dementia

A second volume of stories from our hear/say consultancy with the UCSF Memory and Aging Center (MAC) and the Global Brain Health Institute (GBHI) is now available as well, published in 2019.

This new collection sheds light on the personal and rarely heard day-to-day experiences of aging and dementia, forging space for patients, caregivers, doctors, family members, researchers, nurses, artists, and more to share “stories of aging, dementia, art, work, and life.” For this volume, we also worked with GBHI partners at Trinity College in Dublin to incorporate a global perspective on healthcare, memory, and aging. Order hear/say vol. 2 here.

Check out videos from from two Readers’ Theater events here!

Global Brain Health Institute Summer Course

During the next two years, hear/say was incorporated into the annual curriculum of the Atlantic Fellows for Equity in Brain Health at the Global Brain Health Institute (GBHI) due to the shared values in promoting empathy, raising awareness around issues of brain health, and serving marginalized communities.

This summer course led by VOW introduces the hear/say oral history process and aims to advance Atlantic Fellows’ capacity for empathy, active listening, and authenticity.

The course creates opportunities for Atlantic Fellows to further their practices and projects by utilizing personal narrative as a tool for positive social change. Collected stories are added to the ongoing hear/say archive, and the workshops culminate in a public reading of excerpts from the collected stories.

Student participant Roger Coble reflects on his experience with the hear/say summer course in this blog post.

VOW has helped to strengthen the Fellows’ experiences, and helped to broaden their professional capacities after returning to their home regions around the world. The Fellows have reported how their adaptation of empathic listening skills has led them to become better clinicians, supporting the creation of deeper connections with their patients, as well as helping them operationalize focus groups that empower patient and carer voices for impacting change on health management systems. This is only a sampling from the many ways that have been shared on how the VOW training has impacted our diverse professionals and the lives of the people with dementia that they serve.

Mindy Matice, GBHI Curriculum Manager
Article in the Frontiers in Neurology Journal

VOW and UCSF MAC co-authored an article about this collaboration in the Frontiers in Neurology journal called “Using personal narrative to promote person-centered values in aging, dementia, and caregiving.”

The paper describes the hear/say project and its outcomes relating to the objectives of promoting empathetic listening, open-ended interviewing, discovering individual values and experience, and sharing stories about aging, dementia, and caregiving to reduce stigma.

Documentary Inspired by the Project

Inspired by the hear/say project, filmmaker Cynthia Stone created Keys Bags Names Words, a documentary that highlights people living with dementia and those who care for them. Learn more about the film and find your local movie screening here.

Interested in working with Voice of Witness?

Through our consulting services, VOW offers expert oral history and education support to programs, organizations, and more. These collaborations emphasize the power of sharing stories and build empathy and key student skills. We work with clients to develop customized, interactive projects, workshops, and/or curricular support using VOW’s award-winning methodology.

Please contact Erin Vong for more information.