The hear/say project gave me the opportunity to create the space to listen to my father’s experience of my Grandmother’s dementia. At first this seemed odd because I lived through it alongside him. Yet, I soon realized that as much as I saw or experienced myself, it was not genuine to his experience, and it was this assumption that stopped me from making space earlier on to truly hear his story.
Roger Coble, hear/say participant
Personal stories are a powerful way to share the rich, multi-dimensional nature of people’s experiences with aging, dementia, caregiving, and creativity. The hear/say project began as a collaboration between the Memory and Aging Center (MAC) at the University of California, San Francisco (UCSF) and Voice of Witness (VOW) in 2016.
The goal was to forge space for patients, caregivers, doctors, family members, researchers, nurses, artists, and more to share stories of aging, dementia, art, work, and life. We wanted to shed light on the personal and rarely heard day-to-day experiences of aging and dementia, and through the oral history process, reduce the stigma and othering that occurs by perpetuating a “single story.”
The project expanded in 2018 to include the Global Brain Health Institute (GBHI) and work directly with the Atlantic Fellows for Equity in Brain Health, an international, multidisciplinary cohort of people dedicated to protecting the world’s aging populations from threats to brain health.
The first two volumes of stories can be downloaded as PDFs (Vol. 1, Vol. 2) and are available for sale from Norfolk Press.
Scientific Article in Frontiers in Neurology Journal
VOW and UCSF MAC co-authored an article about this collaboration in the Frontiers in Neurology medical 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 empathic listening, open-ended interviewing, discovering individual values and experience, and sharing stories about aging, dementia, and caregiving to reduce stigma.
Documentary Feature Film Inspired by the Project
Inspired by the hear/say project, filmmaker Cynthia Stone created Keys Bags Names Words, a documentary that portrays stories of both the personal and global impacts of dementia, while following a cohort of young scientists and artists from around the world as they harness creativity, humor, and compassion to lead the way towards hope and resilience. Learn more about the film and sign up to host a movie screening here.
This film is intended to create a shift. A shift in thinking among those who have dementia from hopelessness to optimism and action for a higher quality of life. A shift for carers from loss and despair to connection. A shift towards prevention and knowing how to keep our brains healthy. And a shift that comes from real people sharing their experiences—the funny, the angry, the sad, the powerful—and finding ways we can be less afraid and more inclusive.
Readers’ Theater
The videos below are excerpts from past Readers’ Theater events to share some of the stories from the hear/say project.
2021 hear/say Readers’ Theater Event
2020 hear/say Readers’ Theater Event
2019 hear/say Readers’ Theater Event
Introduction to hear/say Vol. 2
Cliff Mayotte, Education Director at Voice of Witness
The Gift of Today
Narrated by Mary Nardulli
Interviewed by Cynthia Stone, documentary filmmaker
Read by Julia Glueck, UCSF Memory and Aging Center
This is Social Justice!
Narrated by Cao Wenlong
Interviewed by Tee Boon Lead, Atlantic Fellow
Read by Tee Boon Lead and Alex Kornhuber, Atlantic Fellows
Misery is Optional
Narrated by Helen Rochford-Brennan
Interviewed by Cynthia Stone, documentary filmmaker
Read by Eleanor O’Brien, UCSF Memory and Aging Center
She is My Mother
Narrated by Bia Barros
Interviewed by Laís Fajersztajn, Atlantic Fellow
Read by Lea Grinberg, UCSF Memory and Aging Center & GBHI and Lucia Lopez, UCSF Memory and Aging Center
We Just Kind of Went With It
Narrated by Robin Ketelle
Interviewed by Caroline Prioleau, UCSF Memory and Aging Center & GBHI
Read by Robin Ketelle, UCSF Memory and Aging Center (retired)
Behavior is Communication
Narrated by Pam Roberts
Interviewed by Jennifer Merrilees, UCSF Memory and Aging Center & GBHI
Read by Sarah Dulaney and Charlie Toohey, UCSF Memory and Aging Center
Holy Saturday
Narrated by Luz Edith Valentina
Interviewed by Stefanie Piña Escudero, Atlantic Fellow
Read by Stefanie Piña Escudero and Jennie Gubner, Atlantic Fellows
It is a Crazy Good Thing
Narrated by Nene
Interviewed by Lenisa Brandao, Atlantic Fellow
Read by Eddie Europa, UCSF Memory and Aging Center
Instant Joy
Narrated by Joyce Calvert, Jane Dahlgren, Cailin Lechner, and Madhu Manivannan
Interviewed by Phaedra Bell, Atlantic Fellow
Read by Madhu Manivannan, UCSF Memory and Aging Center, and Dvera Saxton, Atlantic Fellow
2018 hear/say Readers’ Theater Event
Welcome from Dr. Bruce Miller, Director of the Memory and Aging Center
Welcome by Cliff Mayotte, Education Program Director of Voice of Witness
“Who Has More Fun Than People?” read by Leslie Goss
“They Actually Made Another One” read by Scott MacDonald & Robin Ketelle
“Being Present” (part 1) read by Sarah Dulaney
“Being Present” (part 2) read by Sarah Dulaney
“At the Bottom of All of It is Love,” read by Kasia Gawlas
“At the Bottom of All of It is Love,” read by Ali Zahir
Hellman Artist film by Keith Moreau, a former Hellman Artist
“I Have Always Considered Myself a Caregiver at Heart,” read by Yessenia De La Vega & Thalia Leon
“I’m Not a Vegetable Yet,” read by Geoff Hoyle, a former Hellman Artist
