Haunted all year

I shuffled my way around the darkened room, leaning over and squinting to make out the items resting on the tables that lined the perimeter and puzzling to form cohesive phrases from the jumble of letters typed on pieces of paper hanging on the back wall. A soundtrack of multiple simultaneous, muddled conversations—the voices of radio personalities?—played in my head, periodically pierced by the sudden wail of a fire truck siren, the closing of a door or the ringing of a telephone. Pain shot up my legs with every step.

The experience reminded me of the haunted houses I attended in my high school days. The occasion was not as fun but was just as frightening, especially considering that 36 million people around the world have similar sensations daily, according to the World Health Organization. The memories will stay with me for a long time.

I was participating in the Virtual Dementia Tour offered by the international nonprofit organization Second Wind Dreams at this year’s American Health Care Association / National Center for Assisted Living annual meeting. The educational tool aims to help people—professional caregivers, family members and others—understand and empathize with those aging and living with dementia so they can better address their needs.

Six of us arrived at our designated time to participate in the tour. We placed thin, plastic inserts with nubs on them in our shoes to simulate neuropathy; donned eyeglasses that had lenses with black circles in the center and blocked-off sides to mimic the loss of central and peripheral vision that can occur with age-related eye conditions; put on headphones through which those aforementioned sounds emerged, to reproduce the effects of hearing loss and confusion; and pulled on sandwich bag-like plastic gloves, then gardening-type gloves, to imitate arthritis and diminish our fine motor skills.

Three at a time, we were led into the darkened room by tour volunteers, who read each of us a different list of chores to complete in a set period of time. Among my tasks were separating out all playing cards with the number three from a deck on one table, drawing a picture of my family and labeling it at another table, folding towels on yet another table and locating a necktie and putting it on. The list was long, and as I made my way around the room amid all of the distractions, I couldn’t remember my other assignments. A “cheat sheet” awaited us on the back wall, but it was written in some kind of code that was frustratingly difficult to decipher.

The allotted time elapsed, with my fellow tour members and I failing to finish our errands but succeeding at increasing our awareness of what it might be like to have dementia. We left the event with a list of behaviors frequently exhibited by those with such impairment—behaviors we might recognize from our time on the tour—and the reasons for those behaviors, as well as a list of strategies that those with dementia might find particularly helpful in our interactions with them. Among them:

• Give ample time.
• Reduce noise and distractions.
• Try not to argue about “their reality.” Just change the subject and move on.
• Create social settings for them. Socialization helps slow cognitive decline.
• Allow them to repeat actions, because doing so can make them feel safe.
• Treat most behaviors as coping mechanisms.
• Stay positive about all of the good things they can do.

According to Second Wind Dreams, I am one of more than 500,000 people in 14 countries, including those at 25 universities and 16 medical schools, who have taken the tour developed by the organization’s founder, P. K. Beville, who has a degree in clinical psychology. The tour is available in five languages.

And you don’t have to attend an industry event to experience it. The Marietta, GA-based organization offers the tour through three different kits that include instructions and materials suitable for individuals and families, clinical and educational settings, or businesses and organizations that encounter dementia. Proceeds from sales of the kits, which range in price from $100 to more than $400, are used to fulfill another goal of the organization, to grant wishes to residents of nursing homes and assisted living facilities.

I wish nobody had to deal with dementia, but until that desire becomes a reality, we all can benefit from the knowledge and compassion that can arise from experiences such as the Virtual Dementia Tour.

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Lois Bowers

Lois A. Bowers was senior editor of I Advance Senior Care / Long-Term Living from 2013-2015.