Posted by Mary Lang
For most of us, conversational speech is some version of an equal exchange. I say something, you respond, then I respond, and so forth, and information is transmitted from one person to another. Even if one person dominates or the other person isn’t a good listener, the conversation falls within a semblance of mutual exchange.
Communicating with someone with dementia doesn’t always follow that pattern. The most typical pattern is that the person with dementia repeats the same story or sentence over and over, and the listener works to respond as if they are hearing it for the first time.
In its later stages, my mother’s Alzheimer’s disease affected her speech even further, as she suffered from a non-fluent aphasia, meaning that although she had a lot to say, the sentences didn’t make sense, and they often trailed off into nonsense rhymes like “the turtles, the trips, the turtles, the trips.” It was harder and harder to have even a semblance of a conversation. One day I had the idea to try writing down everything comprehensible that she said, to see what was there. When you are sitting listening to a word salad, cognitively it’s difficult for the listener to sort through in real time and find the thread, but looking later at the words on the page, something comes through. On that day, my mother talked a lot about “girls” – my sister and myself (perhaps because I was there visiting?), or her two sisters, or perhaps the attendants at her residence. She also said some very clear phrases: “Can we sit up this way the rest of the day? Can you tell us what to do tonight? This is a girl and she lives here. Yes, that’s right.” She was trying to make sense of her world. It was an eye-opening experience.
I recently tried the same exercise with a client whom I visit at a local nursing home. This woman suffers from frontal temporal lobe dementia, and her main symptom has been her non-fluent aphasia. A few years ago, she could still communicate somewhat conventionally. We once went to a Dunkin Donuts after a stressful dentist appointment, and when I asked her what she wanted to order, she surveyed the menu on the board and said, “Something blue” which I interpreted to mean a blueberry muffin. Three years later, her speech is random and incomprehensible, even though she talks all the time. As I sat and wrote down everything that I could understand, as with my mother, far more meaning came through. When the staff started laying out the placemats for lunch, she said, “This is a fancy place” but so surrounded by other nonsensical phrases, I don’t think I would have picked it out unless I had been writing things down.
Of course, in every conversation much information is communicated not through words, but through affection and attention, and through sharing the same space at the same time. Working to communicate on as many levels as possible with someone who has dementia values that person’s humanity, and confirms our own as well.
Mary Lang is an artist and photographer who does associate level care management. She has studied and taught Buddhist meditation for more than 30 years, and is the outreach coordinator for JF&CS Senior Services. Mary’s interest in working with elders arose from her experience with her own mother’s Alzheimer’s disease, and the recognition that good care can make all the difference in how someone ages.