Supporting individuals with Down Syndrome
The Kennedy Willis Center is pleased to bring the Second Wind Dream’s Virtual Dementia Tour® to Pathfinder Village. This powerful experience promotes a greater understanding of dementia among caregivers and family members of those with the disease. Pathfinder Village is one of the few agencies in New York State to offer this training.
Since the mid-1990s, Pathfinder Village has worked with professional researchers to study the risks and causes of Alzheimer’s dementia, especially as it impacts individuals with Down syndrome. Early assessment studies conducted through the Center by the late Arthur J. Dalton, Ph.D., and other researchers from the Institute for Basic Research have guided our current knowledge. More recently, Pathfinder and the Center have partnered with the National Task Group on Intellectual Disabilities & Dementia Practices, a study group of the American Association of Developmental Medicine & Dentistry, to refine training programs offering compassionate, appropriate supports through individuals’ aging processes.
“All of our past aging trainings here have been informative and influenced our direct care practices, but the Virtual Dementia Tour® (VDT®) has allowed our staff to experience the difficulties someone with dementia faces each day,” said Michelle Banks, a recently trained facilitator for the VDT® program.
The evidence-based VDT® training uses patented sensory-altering tools and instructions rooted in research conducted by founder P.K. Beville, MS, who has worked in geriatrics since 1983. Participants complete basic tasks in a special setting wearing the sensory equipment; they are debriefed after the tour to understand the insights they gained. The goal of the experience is to encourage empathy and accommodation toward those with dementia.
"I have a new perspective on what people with dementia experience constantly, from feeling lost and confused to an inability to filter out noises and distractions,” said Pathfinder’s Program Office Manager Monica Clark. “And knowing more about Alzheimer’s memory loss—it is understandable when a person you know may not recognize you, as their memories are now from earlier times.”
Alzheimer’s disease is a neurodegenerative disease that affects over 5.7 million Americans, and is marked by short- and long-term memory loss, confusion, behavioral changes, diminished social and self-care skills, and other symptoms. According to the National Institute on Aging, about half of those with Down syndrome will develop dementia as they age: “People with Down syndrome are born with an extra copy of chromosome 21, which carries the APP gene… Too much APP protein leads to a buildup of protein clumps called beta-amyloid plaques in the brain. By age 40, almost all people with Down syndrome have these plaques, along with other protein deposits (tau tangles), which cause problems with how brain cells function and increase the risk of developing dementia.