What’s it like to have Early Onset Alzheimer’s (EOAD)? This is a question that Rick Phelps, who was diagnosed at age 57, gets asked a lot.
Phelps is the founder of Memory People (Facebook), an online support group that welcomes anyone touched by dementia to share their stories and get help. He’s also made it his mission to share his thoughts, feelings, and abilities as long as he can, to help others understand what dementia does to the person who has it.
So how would he help someone understand what it’s like to have dementia?
As he told Agingcare.com, Phelps says to consider Versed, a drug used in procedures such as minor surgeries. It erases your short-term memory, leaving you with no recollection of what just happened to you in the last fifteen or so minutes.
Give someone that drug, Phelps says. Then make sure that when they come to, they are in a completely alien (to them) environment, from the objects around them to the space they are in. And at first, they’re all alone.
Then, send in complete strangers. Have those strangers talk to the person as if they are kin to them, or close friends, or their physician. Have one of the strangers say that what’s going to happen next will be all right. And then have everyone leave the room, leaving the person entirely alone.
Seems a little frightening, even harsh? Phelps states that while this barely touches what a person with dementia goes through, it’s still closer than anything else to help people begin to understand how the disease robs you of more than just memories, but also of independence, dignity, and a sense of safety.
“I am a patient. Not someone who talks about dementia as if they have had it,” Phelps says.  “But someone who lives with this disease day in and day out.”
Read the rest of Phelp’s post about the hard truths of Alzheimer’s, and subscribe to our Alzheimer’s & Dementia Care blog for more insights.