I recently attended a “Virtual Dementia” experience, created to simulate what life might be like for a person with dementia. It sounds strange to say I highly recommend it, but I really do. It really provides a greater awareness, even though one can never truly mimic what an individual may experience. This session was similar to an experience I provide to my eldercare students and occasional professional trainings. It is an “aging simulation” kit which mimics conditions like glaucoma, macular degeneration, hearing loss, stroke, and arthritis through a series of hands on activities.
This dementia experience really combined all of those sensory deprivations to create a sense of confusion and fear, while giving you the pressure of completing tasks and having somoene else in the room with you, so that all your fears were heightened. Of course, many people with dementia do not have all or any of those particular sensory issues or conditions, but the overall feelings seemed likely to mimic how people must feel. And, how it feels to have someone tell you to complete a number of complex (things we think are simple, but really involved much complex processing) tasks and feel completely overwhelmed and frustrated by this. I recall feeling frustrated that I was not the capable person I identify myself to be. Another participant, said “I just wanted to lie on the bed and curl up in a little ball and go to sleep”. Others expressed “paranoia”, thinking the other person was playing a trick on them, as is often expressed by people with dementia. Everyone felt very disoriented and somewhat fearful. I noticed I startled very easily and yearned for a friendly face. We all could imagine how nice it would have been to have someone come and comfort and guide us gently through the situation.
Interestingly, like persons with dementia, we all had slightly different experiences and reactions. We each brought our own history, experiences, strengths and weaknesses to the moment.
For professionals, family caregivers, and anyone these types of exercises are so useful. Too often, I encounter professionals, even those who regularly work with seniors, who forget the basics of sensitivity and empathy (and I’m sure I’m not perfect either, especially on a rough day). I recall doctor visits where the doctor spoke to me and virtually ignored the patient/client, until I prompted otherwise. Other times, I’ve seen people raise their voice to no avail with someone hard of hearing or assume the person has dementia when they are suffering from hearing loss or aphasia. The sensitivity exercises are good reminders for those of us with the training and background as well.
During this exercise (while waiting on each other to go through it) we also watched a very well done video about a lady with Alzheimer’s Disease and her daughter. It fit well with the exercise because she talked about her frustrations and realizations as she learned more about the disease and her Mom’s experience of it. She tried various techniques to deal with her Mom’s constant phone calls and obsessions over certain issues, until she realized many of the things she was doing were only exacerbating the situation. She was surprised at the peace her Mom felt when she was in an environment designed specifically for dementia. She learned to let go of some of the expectations and preconceptions she had. She realized at one point her Mom was truly a person living absolutely “in the moment”.
If you ever have a chance to participate in one of these experiential exercises, do so. There are some resources on the web to put together your own “aging sensitivity” kit as well.