TO UNDERSTAND AND MEET THE SPECIAL CARE NEEDS of people living with dementia, it’s helpful to walk the proverbial mile in their shoes—or, more accurately, to step inside their sensory world and experience firsthand how they perceive and interpret different stimuli. That’s exactly what the staff at The Gardens of St. Francis did recently through Dementia Live ® , a unique training program developed by the AGE-ucate ® Training Institute.
Dementia Live allows program participants to experience what it’s like for people with dementia to live and function as their reality slowly changes over time, as well as to gain greater comprehension of the complexities of the disease. As they develop a better understanding of the cognitive, emotional, and behavioral changes associated with dementia, their compassion grows and they learn to respond more appropriately when presented with behaviors that might otherwise seem unusual or unpredictable.
According to Brandon Webb, Executive Director of The Gardens of St. Francis, Dementia Live is essentially a dementia simulator. “We created a resident room in which participants had to complete certain tasks while wearing special equipment to simulate what people with dementia go through on a daily basis. The main purpose of the program is to create empathy and understanding in our staff of the day-to-day experiences of people with dementia and elevate our ability to care for those individuals,” he says.
Janet Delcamp, Director of Nursing for The Gardens of St. Francis, explains that the special equipment used in the program is intended to achieve three purposes: reduce the clarity of participants’ vision, produce disruptive background noise in their ears (simulating the overstimulation and auditory hallucinations people with dementia commonly experience), and impair their tactile sense with special gloves. The trainers then observe the participants as they try to perform common activities of daily living—for example, tying shoes, opening a letter, turning the pages of a book, and cutting up meat on a plate—while encumbered with these sensory impairments.
In the last phase of the program, the trainers and trainees meet to discuss their feelings about the experience. “What’s really interesting is that we heard participants say the same sorts of things our residents with dementia often say, for example that they felt helpless, frustrated, or lost,” Delcamp says.
What struck Webb the most about his experience with the training was how difficult he found it to perform simple activities with a reduced sense of hearing. “I definitely utilize my hearing in more ways than I realized, including for balance, identifying where I am, and understanding the space around me,” he says. Delcamp adds, “For me the biggest eye opener was the tactile aspect. Before this training, I wasn’t aware how much the sense of touch changes for people with dementia and how that change impacts their lives.”
The decision of the Gardens of St. Francis leadership to strengthen their staff’s empathy for residents with dementia could not have come at a more critical time. With the baby boomers getting older and our population aging overall, the rate of dementia is exploding in the United States. In fact, the Alzheimer’s Association estimates that 5.3 million Americans currently have Alzheimer’s, and that number doubles to nearly 10 million if you count all forms of dementia. Furthermore, the risk of developing dementia increases with age—and the American population is aging rapidly. In the U.S., someone reaches the age of 65 every 8 seconds, which equates to 10,000 people every day.
To ensure residents with dementia continue to receive expert, empathetic care oriented specifically to their needs, The Gardens of St. Francis plans to continue offering Dementia Live training until the entire staff has been through the program. Delcamp notes that, in addition to benefiting staff members of care facilities, Dementia Live can be very useful to the families and loved ones of individuals with dementia. “For that reason, we also hope to do an event that introduces the program to members of the community sometime in the near future,” she remarks.
