Enid doesn't talk much. Dementia has stolen many of her words. They come slowly and with effort.
But Enid communicates.
Because of a swallowing issue, she eats only soft or minced foods. Her fluids are thickened. Sometimes, her choices are few, and she doesn't have much enthusiasm for eating. But today, she ate a strawberry crepe. It was soft enough to be tolerated.
When she tasted the first mouthful, her face lit up, and tears sprang to her eyes.
As dementia progresses, communication becomes more difficult. Words are harder to find to express thoughts, and both parties can be frustrated. It's important to recognise there are many aspects to communication, and words are only one feature. Learning to communicate with someone with dementia means you must become a student of the person. Is that "worried" look really worry, or is it pain, or confusion, or constipation? All are possible.
To begin our discussion of communication, I want to challenge you to look at the world through the eyes of the person with dementia. Each of these won't apply to everyone, or at every stage, but there is truth here.
The World from My Perspective
- Sometimes, the world is clear, and I understand what is happening. Sometimes, in the middle of an enjoyable experience, I don't know where I am or how I got there. This frightens me, and affects how I communicate.
- If I can't get my ideas across, I think it's your fault. How can you be so dense? I may get angry.
- I may communicate only with body language. It's still communication.
- Time means little to me, so I may be living in a different time today (such as remembering the house I grew up in as "home")and another one tomorrow. Or five minutes from now.
- I may have all kinds of ongoing physical challenges beside my dementia. My sight, hearing and mobility may not work well. I may have issues with my heart and breathing. All of these affect my ability to communicate.
- I react to stimuli differently because I have dementia, and I don't always react in the same way. Something that usually gives me pleasure, may one day (because I am tired, or not well, or all kinds of other reasons) upset me or make me angry.
- a lot of things that used to be true of me, aren't any more.
Even with all of this, I'm still here. Inside, in the core of me, I am still here.
Your challenge is to find me.
As you go through your day, watch the non-verbal cues people are giving. What are they saying? Watch yourself. Is there a non-verbal way you respond? (Here's a hint about me--when someone hurts me, I go quiet and don't meet their eyes.) Explore non-verbal communication with your family and peers, before you try to apply it to people with dementia.
What did you learn?