“People didn’t know how to talk to me even though I was the same person I was five minutes before I told them I had it. They just saw this big A on my forehead. They didn’t look at me as the same person – I was stupid, or couldn’t carry a conversation, or have a single thought on my own, which was very distressing for me.” - Anonymous person living with dementia
Receiving a diagnosis of dementia can be traumatizing. In a single moment, a word scribbled in a medical chart changes everything. This trauma is often assumed to be caused by dementia itself. In reality, dementia was experienced long before diagnosis. The change a diagnosis makes is not an internal one but an external one.
In this three-part series, we will explore how to best communicate within the early, middle and late stages of dementia. I will share what I have learned about communication from the phenomenon of dementia. Dementia can (if we let it) teach us to communicate on a deeper, more human, level. As the late Dr. Richard Taylor, a fierce self-advocate living with dementia explained,
“My relationships with my spouse, my family, and my friends have broadened and in some ways deepened. We spend more time really being together. We talk more, we hug more, we cry more, we laugh more and harder and longer together.”
One of the most useful tools I have found in communicating through the early part of the journey of dementia is to borrow the improvisational theater concept of “yes, and...”. Karen Stobbe is an improvisational theater performer and family care partner. She embodies and teaches the basics of improv for communicating within dementia.
“A basic tenet of improvisational theater. Don’t argue the premise. Build on it. Don’t say no. Say “Yes, and…” - Karen Stobbe
‘Yes, and...’ is powerful in the context of dementia. People living with dementia hear that their reality is incorrect all the time. “No, I’m not your sister.” “No, it is not 1964.” “No, you can’t have ice cream. It’s breakfast time.” Reality is relative. Physics is proving this and our hearts already know it.
As physicist Carlo Rovelli puts it,
“We don't understand the world as made by stones — by things. We understand the world made by kisses or things like kisses: happenings.”
Take any two people living a day together, at the end of the day ask them about it and you will get two different stories. Every moment of the day we agree on a consensus reality. In actuality, we are all living our own personal realities. When we get curious about the differences in our realities we come to know one another.
‘Yes, and…” The ‘yes’ necessitates acknowledging another’s reality. The ‘yes’ says ‘I am here with you in your world. I am curious about it and want to be with you’. The ‘yes’ says ‘I accept you exactly as you are’. The ‘and’ keeps the flow going and builds connection and relationship. The ‘and’ allows you to co-create a moment.
When communicating within dementia, drop expectations. This goes two ways.
First, drop the expectation for communication to be as it always has been. Stay open and curious about how communication is being transmitted and received.
Second, drop the expectation that a dementia diagnosis means one cannot communicate.
Set the intention for communication to ‘being with’. The tradition of ‘being with’ comes from the existentialist movement. ‘Being with’ means that you are not coming in wanting something from the other person. 'Being with' means you do not want them to do something or be a certain way. 'Being with' means you want to be with them wherever, whenever and however they are. 'Being with' shows that you value who is here right now. I use these words of person-centered psychotherapy founder Carl R. Rogers as a guide,
“People are just as wonderful as sunsets if you let them be. When I look at a sunset, I don't find myself saying, 'Soften the orange a bit on the right-hand corner.' I don't try to control a sunset. I watch with awe as it unfolds.”
We can all experience people (including, and especially, those living with dementia) to be as wonderful as sunsets. Be with each other, drop expectations and communicate using ‘yes, and.’