The dementia tour

Dementia is more than a disease — it’s a tragic mystery. For people struggling with dementia, the biggest questions: what helps? what doesn’t help? There is no way to know.

More than 6 million Americans have Alzheimer’s or other forms of dementia. No cure has been found, and families often rely on professional caretakers to help navigate the painful and alienating experience of slowly losing a loved one to dementia.

Amanda Holliday, a clinical assistant professor at the Gillings School of Global Public Health, wants her students to understand the effects of dementia as much as possible. To do that, she dedicates a day of class every semester to the dementia tour. Created by the nonprofit Second Wind Dreams, the dementia tour allows students to experience many of the effects of aging and dementia.

Before beginning the exercise, students place plastic pegs in their shoes to throw off their balance and simulate neuropathy. They wear large gloves on their hands to simulate arthritis and place goggles over their eyes to simulate macular degeneration. But the most disorienting component is the earbuds. “They put earbuds in their ears to simulate some of the sounds that dementia patients tell us that they hear,” Holliday says.

The sounds are similar to an AM radio that can’t tune in, and there are also changes in volume. “I think the hardest part was the white noise and sounds in the background,” says Kelsey Pan, one of the students who participated in the exercise. “It made it a really stressful environment. Even though we were in a nice, quiet room, I felt like I was in the middle of downtown in a big city.”

Holliday says many students don’t know someone who is older, or someone who has dementia. “We can talk about aging, and we can read about it, but until you simulate and experience some of the things that older people or dementia patients experience, it’s not the same. You can’t be as empathetic.”

According to Holliday, more and more people are living well into their 80s and 90s, and the age group of 80- to 85-year-olds is increasing the most. “By 2030, there will be more older adults in this country than there are kids in schools,” she says. It’s likely that her students entering the health-care professions will work with this population.

To ensure her students become competent and sensitive caretakers, Holliday believes this kind of hands-on exercise is essential. “They experience what it’s like to lose concentration, and what it’s like to have balance issues, and dexterity issues,” she says. “All of that will help them do a better job at problem solving when they’re treating or caring for someone.”

Many students were surprised by the intensity of the exercise, and said it had a big impact on their perspective. “I think I’m going to view older adults a lot differently,” says Brittany Crump, another student in the class. “I still have a lot of room to grow in my career and my experience, but I think if I’m working with an older adult in the future, I’ll be better able to understand their limitations, and find what works best for them.”

Video and story by Mary Lide Parker, Office of Research Communications.

April 21, 2014.