Several of the team at Garland Law, including Certified Elder Law Attorney Gary Garland; Tina Ruane, Elder Care Coordinator; and I, Anne Pagnoni, Community Outreach Director, recently had the opportunity to participate in the Virtual Dementia Tour® at Arbor Terrace in Middletown. What an enlightening experience!
Upon our arrival, we were greeted by the friendly team at Arbor Terrace. We were shown to a room where we completed a short form addressing such issues as whether we normally talk to ourselves, if we have a strong feeling of self worth, and whether we believed dementia patients received the care they needed on a day to day basis at home. We were then given plastic inserts with bumps to put into our shoes (I decided to wear heals that day – not a good idea!); put two pairs of gloves on; had our pointer and middle fingers taped together on our dominant hand and other fingers taped on our other hands; and were given glasses to wear that took away our peripheral vision while making everything blurry and yellow. To add insult to injury, headphones that were playing static and multiple talk radio programs were placed over our ears. So much for thinking the Virtual Dementia Tour® would be done on a computer!
Our experience then began as each of us was taken to an apartment that had been outfitted for either a woman or a man. Since we take walking for granted, this walk to the apartment was our first challenge. The discomfort of the plastic inserts in the shoes forced us to slow down and do a little bit of hobbling (especially for me in heals — ouch!). Another smiling face, which we could barely see, greeted us in our respective apartments, and we were given a list of five tasks to complete. We had about six minutes to complete them. Afterwards, we shared our experiences and what we were taking away from it.
“I think I was most amazed at how long the six minutes seemed. I knew that for me it was going to end. There was a light at the end of the tunnel. Unfortunately for older adults living with dementia, they can’t ever escape this feeling,” said Gary Garland. “For them this is their daily existence. They can’t remember what they’re supposed to be doing or where they’re going. They can’t figure out which clothes to put on or where that disorienting noise is coming from. I couldn’t even hear most of the instructions. I did the best I could, and then I became so frustrated that eventually I just sat down on the couch and decided to bide my time. While I was trying to remember or guess what I supposed to do, a loud siren went off in the headphones, and then after things quieted down, a door slammed – I jumped started at least twice, which wasn’t very comfortable with those plastic shoe bumps!”
“It’s so important for people to understand how the mind of an individual with dementia works. They can’t process more than one directive at a time. I would have done anything to have someone give me step by step directions in order to complete my tasks,” said Tina Ruane. “I couldn’t hear all of the tasks I was supposed to complete. We need to remember to speak slowly and loudly so that they can hear us. Never underestimate the value of a smile or a reassuring nod. I did look at myself in the bathroom mirror, but I didn’t recognize myself. That was very disconcerting. I can’t imagine how scary that must be for an individual with dementia.”
I personally was so frustrated because I could only remember three of the five directives I was given. “I kept walking around and around in circles hoping that it would come to me. I found myself talking to myself trying to remember. I was trying to open up a dresser drawer but couldn’t find the handle with those glasses on. I was so frustrated and found myself getting upset thinking that they were playing a trick on me. I was so happy when I finally found it. It made me appreciate why individuals with dementia become combative and angry. They’ve had all of these life experiences and then can’t figure out how to fold their laundry or open up the dresser.”
It was interesting how Gary became the sedentary individual while I became the wanderer. We all said that we were talking to ourselves as we tried to remember what we were supposed to be doing. How quickly we fell into the stereotypes of people with dementia. We all agree that our perception of aging has been changed since participating in the Virtual Dementia Tour®. We will be more aware of how we speak to individuals with dementia. We will provide step by step instructions. We will speak loudly and slowly with a smile on our face. We will exercise greater patience and attempt to calm down their frustrated children. We will treat them the way we want to be treated should we find ourselves trapped in the cave of dementia with no means of escape. Again, for us, we knew this experience was temporary, but it was humbling, both for what these dementia victims go through, but also with the realization that in not so many years we may be experiencing this again – but with no reprieve after six minutes.
We urge any families to consider the above if they get frustrated in dealing with their elders. This program has increased our sensitivity and awareness, and we hope other families can benefit from our words.