Approximately 55,000 Arkansans have Alzheimer’s Disease. Caring for them is difficult, because it is hard to know what they are experiencing. But a new simulation is opening the eyes of caregivers to what it is like to have dementia.
The simulation, offered at branches of UAMS’ Donald W. Reynolds Institute on Aging, is a 10-minute sensory-depravation session that provides the most realistic experience to date of the effects of Alzheimer’s or other forms of dementia.
“I think one of the biggest challenges is knowing how to communicate,” said Kathy Packard, Director of Education for the Schmieding Home Caregiver Training Center in Hot Springs. “How can loved ones communicate with the person they’re caring for? How can people that are paid to come in be able to communicate and offer the best possible care?”
Packard runs a training program through UAMS in Hot Springs. The program teaches relatives of dementia patients, as well as professional caregivers and those who work in the elder care industry.
“Sometimes, people with dementia can’t let us, they just don’t have the capacity to tell us what they need,” she stated, “and so we have to be really good detectives and figure out what it is that—what need do we need to meet today? What is it that we can do to help them have a good day?”
Packard allowed THV11 to participate in the simulation, known as the Alzheimer’s and Dementia Experience: Take a Walk in Their Shoes. It was developed within the last couple of years, and is seen as the leading teaching tool in dementia care.
Packard outfits the participant with shoe inserts, gloves, goggles, and headphones. The shoe inserts are designed to mimic neuropathy, by sending mild to sharp pains from the arch of the foot to the toes. The gloves limit the participant’s sense of touch, but Packard also tapes a couple of fingers together to represent the possibility that the patient had arthritis or a stroke. The glasses blur the participant’s vision, while the headphones play a loop of common sounds.
“What you’re going to hear are sirens, phone ringing. External noises that distract us throughout the day,” Packard said. “We get used to those noises. When we go out, we hear the noise of the traffic and we hear sirens, and anything else. We might even hear a radio playing in the background. We stay focused. Someone with dementia, it’s harder for them to stay focused when they hear all these external noises.”
After the reporter put his equipment on, in a room meant to resemble a dining/living/kitchen space, Packard gave him three tasks and 10 minutes in which to complete them: write a three-sentence letter to his family; set a dinner table for four; and fill a cup halfway with water.
Because of the shoe inserts, Packard said, participants often walk slowly around the room or shuffle their feet, which is common in dementia patients.
The distracting soundtrack often causes participants to forget steps in their tasks. Packard noticed that the reporter talked to himself during parts of the exercise, which she said is not unusual.
“Sometimes,” she explained, “people with dementia will talk themselves through a task. They will give themselves instructions and try—they want to complete the task, so they’re talking the whole time they’re doing it, and they don’t even realize that they’re talking to themselves.”
The reporter set the table, but noticed there were only two knives. He spent several minutes looking around the room to find the final two knives, which were not there. Packard said that obsessive desire to finish a task, while forgetting or ignoring others, is also common among dementia patients.
“Their focus can be re-directed at any time,” she added. “And loved ones can get really frustrated because they’ve got them doing a task, like setting the table, and all of a sudden, the phone rings, and they are off to pick up the phone and never come back to set the table, because they might not remember they were setting the table.
“And it shows them how difficult it is for someone with dementia to be able to process all that. It helps that person that’s caring for the person with dementia move from feeling really sorry for that person, to feeling what that person’s going through.”
When asked about the typical reaction of the participants in the simulation, Packard said, “a lot of it is, ‘I never knew that’s what they were experiencing. I just didn’t know. I’m going to pay more attention. I’m going to be more patient.’ I think that’s the word that we hear more than anything: ‘I never realized my husband/my wife was experiencing this.’”
The simulation is free to anyone who wishes to experience it, and because the equipment is small, Packard said she and her staff can set it up anywhere. To schedule an appointment, call 501-276-0945 or click here.