That was the reaction to Cracked: New Light on Dementia, the filmed version of a play that screened to a crowd of 65 in rural Pahrump, Nevada, in May of 2019.
The title “Cracked” springs from lyrics by famed musician Leonard Cohen — “There is a crack in everything / That’s how the light gets in” — and was created by Collective Disruption: a team of Canadian performance artists and researchers. The team’s website declares: “The families struggle to see beyond the disease until they come to see that each of us has cracks as part of being human.”
While those in the aging field are intimately familiar with Alzheimer’s disease and other forms of dementia, to the general public that world is largely a mystery. Sponsored by Dementia Friendly Pahrump – one of six community action groups of Dementia Friendly Nevada – the film produced a range of emotional reactions from an audience of primarily family care partners, from validation and hope to sadness and, for some, remorse. One person left in tears.
“It was too much too soon for some people,” admits Jan Lindsay, who was then co-chair of Dementia Friendly Pahrump.
Yet most attendees clearly welcomed the chance to discuss the often taboo topic. Some arrived knowing absolutely nothing about dementia. One woman said she finally understood her husband’s struggle for the past three years. Some were confused by the film, which shifts between current reality and memories of the past, portraying the time disorientation experienced by many people living with dementia. In short, the drama was an embodied experience.
Following the film, Dr. Jennifer Carson, co-facilitator of Dementia Friendly Pahrump, and Barbara Payne, Dementia Friendly Pahrump member and volunteer family support group facilitator for the Alzheimer’s Association, moderated a Q&A. The pair skillfully blended their personal observations and experiences with questions from the audience to create a free-flowing discussion that created an intimate environment around a difficult topic.
A special guest preceding the screening was former state senator Valerie Wiener, who served in the Nevada legislature from 1996 through 2012. Then serving as chair of Nevada’s Task Force on Alzheimer’s Disease (TFAD), Senator Wiener described the challenges of dementia, her work on the task force, and provided an overview of the 2019 Nevada State Plan for Alzheimer’s Disease and Dementia.
After the screening, at the next Dementia Friendly Pahrump meeting, Jan suggested that in 2020 the group sponsor a quarterly film festival on aging and dementia, pointing out that film and video can often do what the written word cannot. Jan says feedback after the screening was positive and that she had spoken to many residents who wanted to see the film a second time. The film was illuminating for all, she adds, summarizing the event this way. “Get out there and get the information you need, so you have something to work with.”