WESTERLY — In the hallway Stacy Cassata received instructions on the five basic living tasks she was to perform momentarily. She then entered the test room and stood still, a couple of feet from the doorway, seemingly frozen except for repetitively clenching and unclenching her gloved right hand.
After three or four minutes an observer asked Cassata to perform the tasks she had been assigned, but Cassata said she had been unable to hear the instructions. She was then told to do what she thought she should do. Eventually Cassata started to move around the darkened room performing some of the tasks.
The scene played out Tuesday at PACE/Westerly Adult Day Center on Union Street as part of the Virtual Dementia Tour presented by Connolly Law Offices, a Pawtucket-based law firm, and Continuum Care of Rhode Island, hospice and palliative care providers in West Warwick. The tour, based on the research of P.K. Beville, a specialist in geriatrics, tries to simulate the experience of living with dementia by altering participants' vision, hearing and sense of touch.
"It's really an empathy experience — trying to provide a window or glimpse of what it might be like for someone who might be living with this," said Courtney Lamothe, director of program development at Continuum Care of Rhode Island.
The tour was an eye-opening experience for Cassata, community regional manager at Stonington Arms, a federally subsidized housing development for low income seniors in Pawcatuck. "It's a lot worse than I realized," Cassata said, describing her new insight into what it might be like to live with dementia.
Cassata said she has observed a marked increase in the number of people with dementia over the course of her 25 year career at Stonington Arms. "I have a whole new appreciation for anybody who works with the aging. I think more people need that knowledge who work with the elderly," she said.
Deborah Mansfield, one of Cassata's colleagues at Stonington Arms, also took the tour.
"I just wanted to give up and sit down," Mansfield said of her experience trying to accomplish the tasks while taking the tour.
Participants take a survey assessing their beliefs about dementia before and after taking the tour. They also meet with a counselor who helps them work through their feelings and emotions. "We want them to communicate how the experience felt for them," Lamothe said.
The tour can sometimes produce feelings of guilt for caregivers, who gain new insight into what their loved ones are going through, Lamothe said.
Don Drake, the counselor who provides the post-tour debriefing, said the tour helps caregivers understand dementia in a new way. Drake, a retired clinician who works for Connoly Law Offices, said the firm, which focuses on elder law, provides the tour as a way of giving back. The firm also offers seminars and trainings on senior bullying and senior drug abuse.
The tour was made available to caregivers and members of the community. Staff members of the center also took it. "We all need the reminder. You can be the best caregiver but to have that reminder of the little things is helpful," said Jennifer Young, the center's director.
"About 60 percent of our caregivers are caring for people with some form of dementia so to be able to experience, in some way, what their loved one is going through will give a different perspective, and compassionate caregivers make for a better community and family," Young said.
Beville founded Second Wind Dreams, a nonprofit organization created to change the perception of aging through fulfilling elders’ dreams and offering educational programs to help caregivers understand the physical and mental challenges facing those with dementia.