In 2016, I lost my grandmother to dementia. The matriarch of our family had long been the glue that held us together, and her slow yet painfully steady decline (a combination of age-related health issues and a gradual loss of the memory of how important she was to us) was difficult for us to experience and come to terms with.
The Alzheimer’s Association defines dementia as an inclusive term for any progressive loss of memory, problem solving and basic communication that ultimately negatively impacts daily life.
Alzheimer’s disease is one of the more prevalent forms of dementia, and many of its symptoms were present in the last few years of my grandmother’s life. Experiencing dementia through the eyes of someone close to you personalizes a disease that is tragically all too common among older residents.
The statistics related to aging and age-related disease in DC are sobering. According to the GWU Center for Population Health Sciences & Health Equity, 12.7% of DC’s residents are 65 years or older. In Wards 7 and 8, those figures are 8% and 6.6% respectively, of whom 9% are women and 55% are Black. 32% of senior residents live with some form of disability, and that’s in a city that carries the highest proportion of dementia rates nationally, at 16.8%.
The True Impact
Cold, hard figures like these can obscure the true impact of dementia, which is why The Dap Project’s Rhonda Henderson and Catherine Buell, founder of Wellness Real Estate Innovations, launched “Dementia Stories DC: Honoring Memory, Inspiring Change” earlier this year.
“This is a secret disease that nobody wants to talk about. I think that people just don’t know and it’s overwhelming,” says Buell, who connected with Henderson last summer over “Beautiful, also, are the Souls,” The Dap Project’s collaborative oral history and visual storytelling project at the Anacostia Arts Center.
Both women realized that making space for those suffering from dementia and dementia-related illnesses to tell their stories could raise public awareness of age-related disease and also encourage discussions around policy to support DC’s aging population.
Henderson and Buell – in partnership with the GWU Institute for Brain Health – facilitated arts workshops in spring in Wards 3, 5 and 7 for people experiencing age-related memory loss and for those that care for them. Publicized online and through word of mouth, the workshops invited volunteers to share and have their stories recorded, participate in arts activities and have their portraits taken.
“The workshops were designed to create a space for portraits and storytelling,” explains Henderson. “The central narrative is that you’re not alone on this journey. Storytelling allows individuals to talk about the ways they’re managing their struggles and triumphs and connect with other people and recognize that there are resources that can help them.”
A New Partnership
As an outcome of a workshop in Ward 7, a new partnership was formed between “Dementia Stories DC” and the DC Department of Health. “The department is interested in the power of storytelling to connect with participants and expose them to information that can be helpful for them, like at their annual Health and Resource Fair in June,” Henderson says.
One of the stories is that of Daryl Ditz. During the time spent alone with his wife Nimmi during the Covid-19 pandemic, he began to realize that something wasn’t quite right. Keys were ending up in the wrong place, for example. Nimmi noticed other uncharacteristic behavior from her husband. Though initially reluctant to share his story, Ditz ultimately realized the value of the project as an important part of raising awareness of early onset Alzheimer’s disease. “Once he accepted the diagnosis and accepted how memory loss was going to change how he interacted with people,” explains Henderson, “he became a very vocal advocate for those who experience memory loss and dementia at an earlier age.”
For Buell, dementia is more than just a word. Her mother Vernice experienced a series of strokes in 2008 that surfaced the first symptoms of Alzheimer’s disease. Buell and her family made the difficult decision to move Vernice into supportive care with Carol, a full-time caregiver. “I didn’t know that almost one in five DC seniors has some sort of brain health issue; memory loss, Alzheimer’s. It sometimes feels like you’re the only one but now it feels like people are talking about it,” says Buell, who hopes that the conversations arising from “Dementia Stories DC” will initiate new developments in housing, health and care facilities for older residents.
In Case You Missed It
On June 23, during Alzheimer’s and Brain Awareness Month, as part of “Dementia Stories DC: Honoring Memory, Inspiring Change,” an exhibition of photographs, oral histories and filmed documentation was presented at the DC Department of Health in Anacostia. The exhibition was preceded by an executive roundtable discussion aimed at building policy to retrofit DC’s healthcare and housing infrastructure for an increasingly older population.
For more information, to listen to the stories that DC’s older residents and their caregivers have shared and to take part, go to www.dementiastoriesdc.com.
