Communication and Dementia
By: Cheryl Peltekeis, RN with Home Care Sales
As we have said before, dementia is a very thick book with lots of chapters. There’s a chapter called Alzheimer’s. There’s a chapter called Lewy Body. There’s a chapter called Multiple Infarct (or stroke) dementia. All of them are different diseases, and they all have other causes, but they lead to dementia, which is thinking problems. That’s all that word means. So understand your loved one can have a stroke or be diagnosed with Alzheimer’s disease. They both have memory issues. One is due to blood pressure; one is a horrible disease.
Once again, we are going to reiterate the three cruel realities of Alzheimer’s dementia. One, the whole brain is dying. Two, it is progressive, and three, there is no cure. There are drugs and medications that help, but they don’t cure. They are just buying you some quality time. The following communication strategies should help you better understand the disease while optimizing the quality of time you have with your patient or loved one.
When we talk about communication, we are referring to both verbal and nonverbal. Verbal is the actual words you are speaking. The nonverbal is how you say them, the tone you use, your body posture, hand gestures, tone, volume, inflection, and facial expression. Ninety percent of all communication is nonverbal. So pay attention to not only the words you are speaking but the body language and the nonverbal cues you are sending.
An important courtesy to always remember is to not talk past your loved one or talk at them. Instead, talk to them. It happens all of the time. You take your spouse or parent to the doctor, and the doctor talks to you and asks about your loved one (let’s say Mom), and she is sitting right there. And you two might be having this conversation about her without including her at all. No one likes to be cut off from the conversation, especially if they are the topic of the discussion. Include them.
Okay, let’s go over the some rules of communication.
Try to stay in the moment. Listen to what your loved one or the patient is trying to say. Remember, they have problems with short-term memory. Don’t make them go in the future or past; they can’t do that for you.
If they do not understand you, then rephrase the question. “Let’s go to dinner.” Or “Let’s have supper.” You have two different requests, but it’s the same thing. Also, if you are a medical professional, don’t use medical terms EVER. Example: “I’m sorry, you seem to be suffering some dysphagia, and you also have some A-fib.” It’s easier to say you are having trouble talking, and your heart is fluttering all the time. People understand that. Some caregivers working with dementia patients might ask, How are your activities of daily living going? Instead, say, Can you dress? Can you put your shoes on? How are things going in the bathroom? Make it simple.
If their speech is hard to understand, use what you know about them to get what they are trying to tell you. People with dementia will delve into their long-term memory for you. For example, a patient can say to us every detail about his service during World War 2, but he can’t tell us what’s going on in the here and now. He goes back into his long-term to try to communicate that he’s frustrated. So we listen to where he’s going with his World War 2 metaphor. It turns out he is upset with his wife, who has Parkinson’s. He doesn’t understand why she is failing. We say, “She has a horrible disease,” and he understands that.
If they are sad, let them express their feelings. Avoid the cheerleader syndrome. If you walk in and Mom is crying, you say, “what’s wrong?” She responds, “Daddy.” You can do two things at this point. You can roll your eyes and say, “My goodness, he’s been gone ten years!” or you can say, “Let’s talk about Dad.” She’s missing Dad. The fact that he died ten years ago isn’t essential. What we suggest you not say is, “He’s been gone ten years, get over it, come on, let’s go out to lunch.” Let them express their feelings when they are sad. It’s a horrible disease, and they can pop up with reasons they are unhappy: Image how frustrating it is not to remember things; They are losing themselves. They know this as they progress through early-stage and middle. They know when they are losing it. Get their attention before you speak. We have this incredible ability to walk down the hall, and someone yells, “Hey!” we automatically turn toward the voice, recognize the person, and address them. Simple. Demented people have lost that ability. If you come in and your dad is walking down the hall, and you go, “Dad! Dad!” chances are they have lost that ability to react to your voice and turn around. If you want their attention, get eye contact with them. Catch up with them, step around.
Make sure that they can see you. If they cannot see you, then you don’t exist. Never startle someone with dementia because they startle easily. If you come up behind them and put your arm around them and ask, How are you doing? Don’t be surprised if they get scared. So always make sure you have their attention. If you are in a dimly lit room, turn on some lights. If you take care of a loved one at home, turn on some lights before you go in. Make eye contact. This non-verbal shows that you are interested. We all know how irritating it was when you looked at your kids and said, Have you cleaned your room?” and they roll their eyes at us. Be aware of cultural differences. In some cultures, it’s not polite to stare at somebody.