Communication can be challenging. There are so many things that can get in the way of proper communication; people speak different languages, or maybe we speak the same language but some words mean one thing to one person and something very different to someone else.

Improving Communication

Original article by Teepa Snow, MS, ORT/L, FAOTA, with minor updates by Dan Bulgarelli, PAC Team Member

By Dan Bulgarelli, PAC Team Member

Perhaps you received the message I’m giving in a way that was not intended? Maybe I misheard what you said. There’s always the potential that something was lost in translation. There are many things that can get in the way of effective communication when we have healthy brains, but what happens when one of us is living with dementia?

When a person is living with dementia, whether it’s Lewy Body, Vascular, Alzheimer Disease, or something else, that means at least two parts of their brain are failing. In many of these forms of dementia, the left temporal lobe is affected early. This means that the person will have more difficulty processing the words you are giving them, knowing what to do with those words, and then providing words back to you. This can certainly make things difficult for both of you, but that’s not all.

Communication Ideas

Another form of communication that is changing is communication within the body of the person living with dementia. With a healthy brain, your body sends signals to your brain that your brain then interprets as pain, thirst, hunger, pleasure, or something else. Your brain has the map of your body laid out and knows exactly where these messages are coming from.

With dementia? Yeah, that changes, too.

This means that a person’s leg might hurt but when the message was sent to the brain, it never made it. Or maybe the message was sent to the brain, but the map of the body wasn’t working, so the message was sent to the wrong place. Now, the person living with dementia is uncomfortable, but might not be able to tell you why. Did you know that according to several studies, following a hip fracture, people living with dementia get about half of the pain management medications that someone without dementia receives? Half! Is it because a hip fracture hurts less if you are living with dementia? Of course not. However, there is a very good chance there is at least one, if not two or more, communication breaks happening here.

Either the person living with dementia had missed messages from the area of the body in question, their brain misinterpreted the message, they were unable to form the language necessary to respond, or they didn’t understand the question from the caregiver. Wow! There are a lot of potential roadblocks popping up here. Hmm, well the pain and discomfort is still there, so what happens next?

Help Needed

As the pain and discomfort increase, people become more agitated. When caregivers or bystanders don’t understand what’s happening for the person in pain, particularly someone living with dementia, this is often referred to as a behavior – as if the person is choosing to act this way for no reason. Unfortunately, what often happens next is that caregivers will try to correct the behavior with antipsychotic drugs or other disciplinary tactics. None of this addresses the root cause of all of this, which is the pain or other unmet need that the person living with dementia was not able to express in that moment.

Clearly this isn’t ideal for anyone involved with this, but – what can be done differently?

Tips to help prevent needs being unmet

  1. Practice communication strategies that support all abilities.
    • Using thumbs up/sideways/down with matching facial expressions to check in on someone. Using a visual cue instead of words allows the message to be understood more easily, but it also allows someone to communicate with something other than words as well.
    • Replace yes/no questions and instead start using phrases such as It’s about time for your medicine or Would you rather take a drink or medicine first? These methods cue the brain in a positive way.
  2. Use common sense around what you know about the person and what they might need in that moment. Have they had a lot to eat or drink? They may need to use the restroom. In a surgery recovery scenario, you will know that the meds last 4-6 hours, so as you reach that time frame when the pain meds are wearing off and more may need to be administered, do some exploring, but not with a yes/no question.
  3. Know your agenda but don’t show your agenda. This is one that takes a bit more forethought. For instance, if you think it might be time for someone to use the restroom, don’t ask Do you need to go pee? in the middle of the room. If you wouldn’t want someone to ask you that, someone living with dementia probably wouldn’t want it either. Instead, ask for their help – Hey, I could use your help over here. You’ve always been so good at… and then when you are up and moving you can say Oh, hey here’s the restroom. Let’s pop in and take care of that so we don’t have to do it later.

What to do if the situation does escalate

  1. First, here are some things that aren’t as helpful as we intend them to be. Try to be aware of these or think about when they have been used towards you.
    • Don’t say, Calm down. Is there anything more irritating when you’re upset than when someone tells you to calm down?
    • Don’t use a cutesy or calm voice to say, It’s okay, don’t worry, it’s okay. Despite the good intentions behind the words, it isn’t sending the message you are intending to. Instead of being helpful, it still sends the message of you are having a behavior and you need to stop.
  2. Reflect their words and match their tone. This may seem counterintuitive, almost as if you are yelling at them. However, if you are reflecting their words and matching their intensity (or just below) this signifies that you are with them and you are understanding that something isn’t right. Once you start this and slowly bring your tone down while still reflecting their words, you’ll see they’ll come down, too.
  3. Once the person you are caring for or supporting sees you as an ally, you can use the tips from the first section to help figure out what isn’t right.


They say it takes two to tango, but it also takes two to tangle. Communication can be difficult even in the best of circumstances. Taking steps to communicate in a way that utilizes the other person’s current abilities. This will go a long way in keeping things moving in a positive direction. Using visual cues and reflecting words back are very effective methods of making sure you are on the same page. If you are in the position of supporting or caring for someone, it’s better to be a detective than a judge. An unexpected outburst isn’t a behavior, but a plea for help because something isn’t right. Together we can change and grow.

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