By Maria Shedleski
People speak many beautiful languages all over the world. Some of us can speak more than one; some can barely articulate in our own language. Then there is a different kind of language that can complicate expression: the language of dementia. The verbalization of those in the moderate to severe stages of dementia has been coined “word salad” — a combination of words which is frustrating to comprehend yet sometimes oddly beautiful.
I met with a woman with dementia who expressed to me that the feelings she and her husband had for each other “started dripping and dropping.” I knew what she was trying to tell me. Those words explained a souring relationship better than any other I have heard. The time I went from shoulder-length hair to a practical crew cut, a resident with dementia whom I knew well told me “I love you, half-girl.” A resident with a mischievous twinkle in her eye leaned in and whispered to me “Let’s put on our sparkle heels and hit the lawn.” We went outside for a walk.
In the draining life of a nursing home, I have witnessed many staff people ignoring residents who are earnestly trying to share their thoughts. Whether they are too busy or just too ignorant, many staff do not understand the value of this communication.
But if you do not understand what they are saying, take a word, just one word from the many that can pour from a person with dementia and repeat it back to them. They will take the word and use it again differently. Take another word you might understand from their verbalization and use it in question form. The conversation is meaningful to the person with dementia — not you, necessarily, although it can easily be meaningful to you as well. Try going a whole day without communicating with anyone. Some of you might like it, but you know you have family and friends who can talk with you if you want. The person with dementia does not know this. They are often worried and afraid.
I carried on a whole conversation with a woman who only spoke the word “Wakka.” Picking up her non-verbal cues, the conversation went as follows:
Maureen: (motioning me over to her with a frantic look on her face) Wakka wakka!
Me: (smiling) Hi Maureen, do you need to use the bathroom?
Maureen: (shaking her head “no” with a look of disgust) Wakka wakka!
Me: (with a look of concern) Okay, well are you looking for your husband?
Maureen: (less agitated look, stares me in the eye and with caution says) Wakka wakka.
Me: (smiling again) Well, Earl will be here soon, he usually comes at 12, right?
Maureen: (waving me away as though I am useless) Wakka wakka … wakka.
Me: (waving) Okay, Maureen, well, you have a good lunch!
Maureen: (with a smile on her face) Wakka wakka!
Facial expressions, tone and volume of voice, body posture and stance all contribute to the success of a conversation with someone with dementia. The non-verbals can be more important than the verbal conversation. Maureen only could speak one word, but I focused on her facial expression and tone of voice to realize what she was trying to say. I also knew her background and her husband’s name, so that I could offer this information to her as we were communicating. It is important to know your patient or resident’s background so you can initiate conversation with them.
I had a resident pull me aside and whisper in a frightened voice, “There is a kidnapping cow who is going to steal the children.” She asked, “What is the word for a kidnapping cow?” We sat and I suggested some words like “cownapper.” I asked her if she missed when her children were young and they lived on a farm. She said yes, she did. Yes indeed.
“I can’t have this jelly jam because it makes me sick, and it takes it out of the package that is being delivered.” A woman having severe pain said this to me. Her description of the pain was that whatever was “jamming up” inside her was making her sick. Her description included “jelly,” a similar word to “jam” and so she used both words. Pain can be expressed in many ways and often is translated through crying or yelling out.
“The whole play we were going to do for the chair… I don’t know how to say it but she wants to come out and make it all new and I had to laugh because what she meant was the toilet around it will make it grouchy.” From this statement I could ask if there was a play that this resident enjoyed. I could ask her if she feels grouchy today. She might have been communicating that she had to use the toilet — but she had a smile on her face and was calm, not anxious. I could summarize that the resident was thinking of a happy memory, one that made her laugh.
“I know different ways of sewing and singing and talking but it just gets mixed up anymore.” This was a sentence that was an expression of loss. This resident was telling me that she used to be able to do all these things and now she cannot. The best way to learn a new language is to practice it often. The same applies to speaking with people with dementia. How can we make it better? We can be open to the many forms of communication those with dementia can offer us. We can then discover that the person with dementia still has important things to say, feelings to express and thoughts to share. It is up to us to enter their world. It is up to us to take the journey with them.
Maria Shedleski is manager of volunteer services at Lancaster General Health/Penn Medicine in Lancaster, PA.