I Don’t Fear Getting Old, I Do Fear Getting Alzheimer’s.

Stepping into Dementia: A Virtual Tour

Recently I was given the opportunity to take the “Virtual Dementia Tour.” I jumped on it. This program comes out of research conducted by PK Beville, M.S. and founder of Second Wind Dreams®.

The Virtual Dementia Tour (VDT) is an experiential learning experience that uses patented sensory tools which alter your senses while you try and complete common everyday tasks. The physical and mental challenges of those with dementia become heartbreakingly clear. As one testimonial states: “You are an active learner… you walk in the shoes of someone with dementia.” (Jump to Lessons Learned)

I was excited but nervous about the VDT. Intrigued to know if my experience would be like others, I invited several colleagues to join me. We experienced the Virtual Dementia Tour at Solana Doylestown, in Warminster, PA and their staff could not have been more welcoming. Here are our stories.

Deb
I volunteered to go first. I was “suited up” to mimic what it is like to walk with neuropathy, have arthritic hands, and loss of vision. Before being taken to another room, I was told I would be asked to perform five everyday tasks, I would have limited time to complete them, and the five tasks would be posted in the room as a reminder. Last, I put on headphones to mimic being unable to decipher sounds.

I am here to tell you I did not complete one task in the allotted time. I could not hear the directions due to headphone noise. I could not read lips. I did not remember the tasks were posted. I found myself shuffling, struggling to look over or under the glasses, turning my head to take in my world and slow at performing even the simplest of tasks, especially those that required fine motor skills. I found lights distracting and unexpected loud noises made me jump.

It was a long eight minutes. I didn’t know what to do, so I tried to make educated guesses based on what I found in the room. I can imagine the frustration a dementia caregiver might experience when giving a simple direction, only to find the patient doing something completely different. But know I have a perspective from the other side. I had NO idea what I was being asked to do and the constant noise in my head was distracting. I left that room with a headache.

I also left that room with a greater appreciation for some of the information I’d read about living with, or caring for, someone with dementia. Unexpected noises scared me, so advice to approach the person from the front and identify yourself became real. Turning the TV or radio off while communicating to keep distracting noises to a minimum makes sense given my inability to decipher sounds. I understand how disorienting a new environment must be for someone with dementia. And reflecting on this experience later, I could imagine how difficult the early stage of dementia is for someone. I could “think” my way through and guess the tasks. But it was unnerving to know I needed to do something and not know what, or, how it should be done. Concentration was difficult and I was edgy waiting for the next loud noise.

Lauren
“I found the unrelenting noise hard to deal with, all the other physical parts I could get past. That is partially due to knowing there was a time limit, so I could modify my “normal” to perform a task. The loud sirens freaked me out, I could not get past the loud disturbances. I can’t imagine always being fearful of being startled out of my skin. I imagine it would feel like a constant violation.”

“By the middle of the exercise, I was frustrated, I knew I should be doing something but what? Towards the end of the time, I was pacing – what else did I need to do? I felt anxious because I didn’t know what to expect. Would someone tell me when my time was up?”

“I came away with a greater appreciation for the stages of dementia and how hard it must be in the early stages, knowing things are not right and recognizing this is happening to you.”

Only Lauren found the list of tasks. The first task made no sense, so she skipped it and started at the bottom. Her experience was more about uncertainty and anxiety around loud noises, and being able to adapt to the limited eyesight knowing it was only for eight minutes. By the end, she was frustrated and glad to be out of there because of the unrelenting noise.

Lauren is the only one that had gone through training for working with dementia patients. In training, she was taught not to come out of nowhere when you approach someone. After this experience, she would modify the volume of her voice, be much softer and slower when approaching, and would use more gentle redirection in caregiving.

Paula
“I failed miserably. I could not understand the directions, and only heard one of the five tasks. I could think my way through the challenges because my problem-solving skills were still available, but the noise was very distracting and hard to handle.”

“I didn’t see all the tasks, so I started one that required organizing and found that things escape your hands as you try to work. When you can’t conceptualize, and express yourself, you became very task driven. I was feeling vulnerable in this situation, so tasks gave me some sense of control. I just wanted to finish a task, then do something else.”

“The loud noises were shocking and made me feel vulnerable as well. I was feeling very warm and anxious, like I needed to keep busy. Since noises are magnified, I wasn’t sure what the sound was or from where it was coming. Then I thought it was a real fire alarm and realized how hard that must be if you are fragile and can’t run in an emergency.”

“I can now grasp the scope of what is involved with getting older. Carrying on with your life that way is hard. Imagine day in, day out it doesn’t get any better. And how hard it would be to notice your own decline and not be able to do anything about it. I can imagine feeling anger and frustrated in this situation. And I would have found it annoying to be redirected. I would have wanted an explanation of what you wanted me to do when redirecting me.”

Paula agrees that it must be difficult at the beginning stages when you can rationalize that you are losing control. She adds “I believe that the same feelings of frustration and anxiety in the initial stages of dementia can be carried through all stages. In the later stages, you cannot rationalize them or conceptualize them as well, but the visceral feelings of not being yourself and in control are there.”

Mary
Mary was the bravest of us all. She doesn’t like surprises and likes to be in control of her actions, so she was somewhat anxious about what to expect.

“The constant loud noises in my head and not being able to hear the instructions, although I could see they were being given, took my attention away and made me a little disoriented at first.”

“I never saw the list of tasks. I began walking around and wasn’t sure exactly what needed to be done, but I knew I could fold laundry. I focused on that task expecting to finish and move onto others but time ran out.”

“The random extra loud noises were unexpected and very startling. It was a very humbling experience. I can’t imagine living like that and it brought back memories of my mother-in-law; doing such an easy task that turn out to be not so easy.”

Lessons Learned:

• Alzheimer’s is often broken into stages: early, middle and late. How to communicate or care for someone with Alzheimer’s will change as the person moves through these stages. An excellent resource on communication can be found here: Alzheimer’s Org: Dementia Communication Tips
• You can read about the Virtual Dementia Tour here: Virtual Dementia Tour
• You can read about Second Wind Dreams here: Second Wind Dreams:Empowering Elders to Age with Dignity, Hope and Joy

Thank you to Solana Doylestown for giving us the opportunity to take the Virtual Dementia Tour.

I want to thank Lauren Jochym, MSW, LSW, Paula Muller Founder of Sociavi and Mary Brown, Independent Associate, Legal Shield/ID Shield, for joining me on this journey.

Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.

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