Virtual tour allows people to see what it's like to have dementia
Katherine Autin thought she had a good idea of what people with dementia go through — until she took the Virtual Dementia Tour.
With her vision distorted by special goggles, her hands covered by clumsy gloves and headphones blaring distracting sounds in her ears, Autin tried to complete a series of tasks that had been assigned to her when she walked into a large living room area.
“I had to fold towels and I couldn’t see the corners, so I was just throwing them together,” Autin said. “I was trying to find a 'page 48,' and I couldn’t even see the pages. … No wonder they (people with dementia) get disgusted and frightened and frustrated and angry and resentful.”
Autin, a patient advocate with Parkinson Partners LLC, was one of about 100 people from various backgrounds who took part in the March 23 event at the Wesley Manor Retirement Community on East Manslick Road.
Second Wind Dreams, a nonprofit dedicated to changing the perception of aging, trained Senior Helpers — a non-medical home health company — to present the traveling Virtual Dementia Tour.
“We want to help people care for their loved ones and be better caregivers,” said Nancy Galloway, co-owner of Senior Helpers. The tour “helps people understand what their loved one is going through.”
Many people are unable to ace the mundane tasks that they're asked to complete during the tour, whether it's handling medication or trying to set a table for four.
►RELATED: 10 warning signs you might have dementia
"You really feel lost," said Sharon Cissell, 69, who wanted to get a greater understanding of what dementia is like and to learn how to recognize it in others. “I don’t have it in my family yet, but we’re all aging."
The Alzheimer's Association defines dementia as a slow decline in memory, thinking and reasoning skills. People who have it may forget where they are or how they got there or how to play their favorite game.
Dementia sufferers have “significantly impaired intellectual functioning that interferes with normal activities and relationships," according to the National Institute of Neurological Disorders and Stroke. "They also lose their ability to solve problems and maintain emotional control, and they may experience personality changes and behavioral problems, such as agitation, delusions and hallucinations.”
Those with moderate or advanced dementia tend to need 24-hour care and supervision to keep from harming themselves or others and may need help with routine activities, such as eating, bathing and getting dressed, according to the institute.
Alzheimer’s disease, the most common form of dementia, affects more than 5 million Americans, and the number of people age 65 and older with the disease is projected to nearly triple to 13.8 million by 2050, according to the association.
Cliff Whalin, a spokesman for Wesley Manor, said the staff encounters families on a regular basis who are struggling to relate to family members who have dementia. The tour, which attracted people from both inside and outside the facility, "helps raise awareness," he said.
Participants are debriefed after the exercise to give them a greater understanding of what they’ve experienced and how dementia might be affecting someone around them, such as a spouse or parent who can no longer multi-task.
“So many people think, ‘Well, she just doesn’t listen. I get tired of her. She doesn't listen to me,’” said Andrea Foreman, a trainer/educator with Senior Helpers. “They’re listening to you. They can’t hold it.”
Kitty Wilkins, whose father had dementia, said the tour provided valuable insight.
"It helped me to understand the way he was," said Wilkins, 72, of Louisville. "I'm really glad I came."
Reporter Darla Carter can be reached at 502-582-7068 or dcarter@courier-journal.com.
WARNING SIGNS
Dementia is a slow decline in memory, thinking and reasoning skills, and Alzheimer’s disease is the most common form, according to the Alzheimer’s Association. Here are some warning signs.
- Memory loss that disrupts daily life.
- Challenges in planning or solving problems.
- Difficulty completing familiar tasks at home, at work or at leisure.
- Confusion with time or place.
- Trouble understanding visual images and spatial relationships.
- New problems with words in speaking or writing.
- Misplacing things and losing the ability to retrace steps.
- Decreased or poor judgment.
- Withdrawal from work or social activities.
- Changes in mood and personality.
Source: Alzheimer’s Association