Mill Valley filmmaker's documentary tackles the stigma of dementia

(Courtesy of Cynthia Stone

A scene from Mill Valley filmmaker Cynthia Stone's new film, "Keys Bags Names Words," which portrays stories of both the personal and global impacts of Alzheimer’s disease and other forms of dementia.

(Courtesy of Cynthia Stone

Mill Valley filmmaker Cynthia Stone in Brazil with a capoeira class featured in her new film, "Keys Bags Names Words."

Courtesy of Cynthia Stone

A scene from Mill Valley filmmaker Cynthia Stone's new film, "Keys Bags Names Words."

Courtesy of Cynthia Stone

Director Cynthia Stone sees her film "Keys Bags Names Words" as an inspiring testament to the human spirit.

When Cynthia Stone was filming her documentary on Alzheimer’s disease and other forms of dementia, almost everyone she met shared that they knew someone who was struggling with a loss of cognitive functioning.

At the time, she didn’t. Then it unexpectedly became personal.

“In the middle of making the film, we were filming in Brazil, my husband called me and said, ‘Hey, I think mom is forgetting to feed herself,'” says Stone, whose late mother lived in a cottage on their Mill Valley property. “She was really struggling and near the end of her life, she had a series of strokes, sadly, and it got to a point where she couldn’t remember who I was.”

Stone hadn’t thought much about dementia when she was chosen by the Global Brain Health Institute, based at the University of California, San Francisco, and Ireland’s Trinity College Dublin, to film the documentary, “Keys Bags Names Words.” But it ultimately became an invaluable resource for her. “Keys Bags Names Words” has its United States premiere on Sept. 7 at the Vogue Theater in San Francisco followed by screenings across the country in recognition of World Alzheimer’s Day on Sept. 21,

“Making the film really helped me be with her in a way that I was able to let go of the fear of it and be with her and enjoy the person that she was in the moment,” says Stone, whose award-winning work has been featured on KQED, PBS, the BBC/PRI and elsewhere. “Not that it wasn’t really hard sometimes, but I was really able to find those moments of beauty and magic, where we’d be lying in bed together and I’d be reading to her and listening to her, having a really lovely time, and she’d turn to me and say, ‘Now, who are you?’ But in the moment letting go of those labels of, “I’m the son’ or ‘I’m the daughter,’ and just going where that person is. That’s the biggest thing I learned.”

The film is an outgrowth of the institute’s “hear/say” oral history project, which records and shares the stories of old people, caregivers and people working in the field of dementia. The goal is to change the way we talk and think about dementia, from hopelessness to optimism, and to also offer actions people can take right now to help keep their brains healthy for as long as possible.

It matters, Stone says, because the world is getting older and the number of people living with dementia is expected to grow exponentially, to 152 million by 2050. That will likely overwhelm communities, public health care systems and economies worldwide, as well as families and loved ones.

Among the ways people who are seeking to engage people living with dementia and their caregivers — “We call people care partners now,” Stone says — is through dance, art, music and theater. More health-care providers, gerontologists and scientists are acknowledging that creativity can boost the physical and psychological health of those living with dementia while also creating essential social connections.

One of the people featured in the film is artist, writer and medical anthropologist Dana Walrath, who shares how dementia transformed her relationship with her mother. “So many people get antipsychotic drugs thrown at them and are brokenhearted. But, it’s about meeting them where they are at and keeping open to what’s new,” she says in the documentary.

Another is Jill Harmon, who has been caring for her husband, Don, for 14 years. “She’s remarkable,” Stone says. “She first felt a lot of shame about it, and not wanting to go out. She didn’t want to do anything that would demean Don, but she realized later that that was just a part of who he was.”

The film offers “a tremendous insight into the dementia journey for different families,” says Sylvia Thompson, a contributor to the Irish Times, after the film had its world premiere during Trinity College Dublin’s Creative Brain Week earlier this year.

Stone hopes her documentary builds awareness, offers hope, lessens stigma, connects people to resources and highlights the work being done across the globe to address the disease. People with a dementia diagnosis can still have a high quality of life, she says. So can their care providers.

“If you’re someone caring for someone with dementia, I would not want to at all deny how heartbreaking and difficult it is, but to try to find those moments of beauty and humor, and try to stay in the moment,” she says.

And she hopes everyone, not just people like her, with a family history of dementia, learns that there are actions they can take right now to help stave off the disease, whether it’s learning a new language as she is, or an instrument, or exercising, or maintaining social connections.

“It impacts so many people,” she says. “What’s different about this film is that it does show how difficult it can be, and just the heartbreak of dementia. It doesn’t try to deny that at all. But it really does show that there is hope and there’s a lot we can do.”

What: “Keys Bags Names Words”

When: 7 p.m. Sept. 7

Where: Vogue Theater, 3290 Sacramento St., San Francisco

Admission: $12.50 to $15

Information: KeysBagsNamesWords.com

More: The film will also be screened at Rialto Cinemas Elmwood in Berkeley on Sept. 13 and at Rialto Cinemas in Sebastopol on Sept. 19.

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