INDIAN RIVER COUNTY — Intense, enlightening, frustrating, disorienting, confusing, sad and scary are just some of the feelings participants described after experiencing Virtual Dementia Training at the Alzheimer and Parkinson’s Association of Indian River County.
Eight certified nursing assistants, employed by the Senior Resource Association at its adult day-care centers, were invited by the Alzheimer and Parkinson’s Association to participate in the program, which was administered by Farah Sivolella, executive director of East Central Florida Memory Disorder Clinic at the Health First Aging Institute in Melbourne.
“One of the missions of this organization is education,” said Jamie Jackson, who provides public relations for Alzheimer and Parkinson’s. “This really is helping to fulfill that. The training is developed for both the caregivers of a loved one as well as for health-care professionals who are in settings where they have to deal with various forms of dementia or memory disorders.”
Virtual Dementia Training is an interactive tool created by P.K. Beville, a geriatrics specialist and founder of the nonprofit organization Second Wind Dreams, to help caregivers respect patients’ behaviors and needs.
The premise is to have caregivers immerse themselves in the experience – to walk in the footsteps of aging patients – as a way of understanding the vagaries associated with the disease.
“When you think about the early stages of Alzheimer, it’s hard for the caregiver to even break through the barrier to bring them into the care center,” Jackson added. “This kind of training can be very valuable. It’s human nature to react with frustration. The more types of tips they can have, the better they can understand.”
During the training, participants are “garbed” with paraphernalia intended simulate the diminished physical and sensory skills of aging Alzheimer and dementia patients, and are then asked to complete a set of simple, everyday tasks.
Goggles are worn to impair central and peripheral vision, simulating disorders such as macular degeneration, glaucoma and cataracts. Shoe inserts convey the pain of neuropathy.
Gloves, with several fingers taped, replicate the loss of motor skills in arthritic hands. Headphones playing a constant barrage of distracting static, voices, sirens, etc., simulate hearing loss and the disorientating noises dementia patients suffer.
With their senses altered, participants begin to appreciate how difficult it can be for patients to focus and remember even the most basic instructions.
Like the patients they care for, they soon find themselves confused and bewildered – wandering the room aimlessly or frozen in place.
“It’s disorienting; it’s so frustrating,” said Peggy Cunningham, Alzheimer and Parkinson’s executive director.
She and volunteers from the organization experienced the training themselves before administering it to the Senior Resource Association participants.
“I was prepared for this, because I knew I was going to have tasks to do,” Cunningham said. “And I still couldn’t remember if I was supposed to do it in a particular order. The whole time you’ve got the noise going on. You’re trying to see things. I couldn’t remember the order of things. The towels; couldn’t remember how many towels. And then all of a sudden the alarm goes off in your ears; then a door slams or something. It’s frustrating and it was uncomfortable. I can’t even imagine going through it more than seven minutes.”
The East Central Florida Memory Disorder Clinic, which sponsored the training, is one of 15 state-ordered memory clinics.
In addition to education, they offer a geriatric clinic where individuals concerned about memory issues may be evaluated to rule out factors such as depression, medication, infections and other medical conditions which may impact memory.
“This is the first time we’re offering Virtual Dementia Training to the Alzheimer & Parkinson’s organization and we’re very excited about it,” said Sivolella. “It’s an example your state dollars at work. With Alzheimer or dementia patients, because we can’t really walk in their shoes, we don’t know what they’re going through. This may not be exactly what they’re going through but it will give you a better awareness.”
Cunningham said they eventually hope to provide the program on a regular basis to family caregivers.
Unlike professionals, who generally do not meet patients until the disease has progressed; family members often have a hard time coming to grips with slow changes in personality, concentration and physical abilities.
In the beginning caregivers may think the spouse or parent is just being difficult, leading to frustration and anger on both sides over why tasks that used to be second nature can no longer be managed.
“It can take several hours to get them out the door,” said Sivolella. “We’re just experiencing it for seven minutes – they’re living with it all day long.”
“It was weird and cool in a way,” said Monique Daniel after the experience. “I think kids should do that too. It would be a good experience for them so that they can see what their grandparents are going through. Everyday activities they’ve been doing for so many years and now it’s difficult. It’s an eye opener. The hardest part was concentrating with all the noise in the background; all of the sudden there would be a loud noise.”
“What an enlightening experience. If all of this is going on in their heads, then this is why they’re so frustrated. My feet hurt, I can’t move my hands, I can’t see and I can’t remember. And then you’ve got the noises in your head. I just wanted to cry,” said Ella Ford. “I think I will give them even more respect for what they are dealing with. It does force you to see things a different way; there’s no way you can’t. Because you can’t imagine until you walk in their shoes. I would not ever have imagined. Well done; very well done.”
“It was very intense. Just seeing what they have to go through on an everyday basis. When you know you’re supposed to be able to do something – just folding a towel – my concentration was affected. It was an eye opening experience,” said Anithra Minus.
“We can work with them, but we don’t know what they go through,” said Cunningham. “It made it feel more real. You see why maybe they’re acting out. You can remember being able to do things quickly, but you can’t do that anymore. I can see why someone wouldn’t be happy. It’s such a simple program, but it can really make a difference.”
