So some of you may have heard about the 'virtual dementia experience' or 'virtual dementia tour'. It's often recommended that caregivers go to one of these, when it's offered locally, to get an idea what it's like to have dementia. They modify your sensory input in multiple ways, and then before entering a room with various objects, you're given instructions what to do when you're in there, tasks relating to clothes in particular.
As a caregiver I've been meaning to do this for a couple years, so I had it on my calendar for this week, something to check off a list and to walk away with a better understanding of what's it's like to have serious memory issues. Now that I've done it, I don't think I should have. Like learning one's apoe4 status, there's no going back. When I left the experience I stopped by a landscaping place that holds good memories for me, but I found that the confusion the experience triggered in my brain continued to a degree, not severely, but for instance I had to concentrate on where the walkway was going that I was walking on, and placing my feet on the walkway, something that should be automatic while enjoying the plants. So my first caution is if you do this, don't plan anything right after. Give yourself time to integrate what you've just experienced and return to Your normal. Just go home or to a friend's house, for example, to process it.
The other caution is if you have any PTSD think hard before following anyone's advice to go to the virtual dementia tour. I have some active PTSD, albeit mild for the world of PTSD, stemming from something that happened this year (thankfully not directly to me but far too close for comfort). I found the anxiety and confusion of experiencing an approximation of dementia and what lies ahead for my parent, layered onto my new PTSD baseline for stress, was too much. While I've had anxiety in life, I've never had a panic attack, and I've had two today.
Some day in the future I may be glad I did the virtual tour, it may even motivate me to be disciplined on my quest to prevent or delay this horrible disease, but today I wish I hadn't gone. I think in my case I was better off not experiencing that. I was already a loving and patient caregiver, so I didn't need this hit of devastating and disorienting reality why I should be. I plan to call the Alzheimer's Association and tell them to get the word out to the people who run these that they should warn anyone with PTSD that it could exacerbate their symptoms. They did give fair warning about strobe lights and I skipped that part, but I underestimated the effect of the other modifications. I'm even wondering if it's particularly bad for e4 brains in some way, sort of feeding the toxic stress circuits we try to damp down.
Even without PTSD, don't feel like you have to go to these. It is helpful in many ways, but it's not easy. Try to assess whether you're in a strong enough place for it. That extra awareness was the last thing I needed to be dealing with. Why didn't I see that coming
I can confidently say that right now a little alcohol would be medicinal for this e4 that raaaaaaaaarely ever has any.