Since retiring in 2022 from a nursing home career of more than 30 years, I have been reconsidering my own perspectives on dementia. I attended the 2022 Dementia Action Alliance Conference in Indianapolis. When I checked in, the desk clerk told me to follow the yellow tape to find conference locations. My first thought was, “What a great idea—wayfinding cues for people living with dementia.” But why do I think I do not need wayfinding cues myself? I followed yellow tape to the correct elevator, the bathroom, the exhibit hall, across the street under train tracks, and into a different building. Though I’m hopelessly poor at directions, not once did I need help. I thought how great it was to have the tape in place for people living with dementia.
When I checked out, I mentioned to the desk clerk how helpful the yellow tape was. She shared how sorry they all were to see the dementia conference end. “None of us was interrupted answering the same direction questions over and over and over,” she said. The yellow tape helped us all find our way around an old building.
Understanding what we have in common helps me not only to understand my own cognitive function, but to better support those living with dementia.
In the introduction to his book Living in the Memories of God, John Swinton challenges me to consider how I want to be treated if my memory is lost. His own answer is: “I hope that I will be loved and cared for just for who I am, even if who I am is difficult for me and for others.” And in the book Dementia with Dignity, author Judy Cornish reminds me that not all cognitive skills are lost to dementia. Yes, dementia diminishes rational thinking, memory, and some attention skills, but we seldom hear about the cognitive skills that remain, such as our intuition, experiential skills, and other attention skills.
The real experts are people living with dementia and their companions. Persons living with dementia do have strengths. When words and facts are forgotten, emotional memories accumulate. And memories can be present even as they become less accessible. I am learning as a dementia companion that I can fill in memory gaps if I understand which cognitive skills have been lost and how to work with those that remain.
Loss of memories and abilities doesn’t make a person less of a person, and there is value in seeing how much we still have in common. As the yellow tape at my conference reminded me, we are all in this together.