Last week, I attended the Virtual Dementia Tour®, authored by P.K. Beville, which was being hosted at my mom’s memory center. It was brought there by Synergy HomeCare. I had just read that the Cobb County police department had experienced this and was intrigued, so I definitely wanted to attend this. It was a bit strange having it where my mom is living, because she was there and wondering what I was doing. She and other residents were interested in what was happening around them. I told her it was helping family members understand what it was like to live there. She seemed good with that.
When it was my turn, I was given things to put on that impaired my senses, specifically sight, hearing and touch. I was then led to a room and, once inside, given instructions for five separate tasks. I was told I would have seven minutes to complete them. There was another person in the room also doing tasks as well. Before I even entered the room, with the sensory impairment I felt, I was already feeling anxious. When I entered the room and set about finding the tasks to do them, I felt like I was lost in a strange world. I could barely see, barely hear and could not use my fingers well. What ordinarily would have been simple tasks became nearly impossible. I felt overwhelmed, frustrated, and ready to get out. That was probably the saddest part, knowing I could get out after a few minutes, but people like my mom could not ever get out.
After I was escorted out, I went to a room with other participants where we filled out a post-tour survey and had a debrief session. One of the questions asked how we would do things differently with our loved one. I wrote that I would ask my mom questions to see if she was comfortable with the environment. Apparently, people with Alzheimer’s lose their ability to filter background noise, so someplace that seemed okay to me may be overwhelming for her. My sister and I had already observed that large stores or loud restaurants were uncomfortable for her. Now, I better understand why that is.
In addition to how comfortable she is in the environment, I also gained a much better understanding of why it is best to limit directions to one at a time. With our temporary impairments, we were given a list of five tasks to complete. By the time I was given them all, I had already forgotten the first and was not even sure I had heard them all correctly. I felt very anxious trying to remember them as they were being said and found myself repeating them aloud over and over as I made my way around the room. With my mom having a very short-term memory, I can see how she would get immediately agitated if she was given too much to do at once.
During the debrief, we were told that much of what happened in the room related to main areas of behaviors that we might witness with our loved ones. Feeling overwhelmed by tasks was one I just discussed. Reinforcement was next. We were not given reinforcement in the room to let us know we were on the right track. This was so that could understand how important positive statements can help with anxiety. We may have found ourselves making negative statements when we were getting frustrated. We might have mumbled or hummed, which apparently people do as a self-soothing technique. We were told we could not ask for help to show how important when people ask for help , even if they do it over and over, it is important to give it. Other behaviors included, strange behaviors, following others around, repetitive behaviors, wandering, hoarding and rummaging. Several people in the group admitted to doing these while in the room.
For strange behaviors, the facilitator said that as long as they are not hurting themselves or others, or being unsanitary, that we should just learn to be okay with the behaviors. My mother, who always liked to be dressed well, has been sporting her nightgown with pants most days. This is bothering me, especially when she talks about it as “a very long shirt that has no end”. I have to keep myself from yelling, “I know, that’s because its a nightgown!!!” So, I now know to just let that go.
I found the tour to be incredible. We can read and discuss about what the disease is like, but to actually experience it and to almost literally “walk in their shoes” brings a whole other level of understanding. I am so appreciative of Synergy HomeCare and my mom’s place for hosting this for the community. I am so glad that the police department experienced this and all of the other places that have as well. We want them to live the best lives that they can and the more people understand what it is like for them and how to help them, the better their lives will be!