Voices of dementia patients disappear. Almost all of us have cameras and video recorders, but many of us don’t think it’s important to record our loved ones. Consequently, voices of #dementia patients vanish from our whole culture. A team in England is working to change this trend through the Dementia Diaries project.
The Dementia Diaries project — which originated at Leeds Beckett University in England — collected 1965 audio diaries from participants with early onset dementia. They provided participants with mobile hand sets and invited them to make audio diaries of their experiences. This work was part of a concerted effort to “develop a public record and a personal archive of individuals’ experiences of living with dementia.”
Real Voices of People with Dementia
You can explore the Dementia Diaries project by going to the online archive published by On Our Radar. On Our Radar is a “team of journalists, software architects, digital storytellers and development workers” who use the power of citizens to spark change. Their work solicits opinions from people who live at the margins of society. They publicize this material so policy makers hear more ideas as they make decisions affecting us all.
Before my mother got sick, she was very well-organized. Mom had a methodical approach to solving problems. Influential people relied on her because she was very responsible, yet also gracious. If Old Mom could speak, she’d have lots of ideas to offer leaders who must now address the dementia epidemic.
The Dementia Diaries project did us a tremendous favor by asking #dementia patients to share insights about the disease. I wish I would have done that with my mother long ago. If your loved one still talks, take a minute to ask their opinions about things and record their responses. In the future, you will value what they say even more than you do now.