Effective Communication: Dementia Challenge

If you’re caring for someone with dementia, you know it can be very frustrating. There are so many conversations that seem to be on an endless loop of you repeating the same thing over and over again and your loved one failing to respond or getting agitated. Caregivers of people with dementia report this is one of the most difficult aspects of their role. Each day begins with an intention to make the most of the days you have together and a genuine desire to keep your loved one safe and content, but a short while later, you’re tense and your loved one is agitated. There is nothing you can do to reduce the confusion and sadness your loved one is experiencing but there is a lot you can do to reduce your frustration and minimize your loved one’s agitation.

You can begin by making a commitment to stop using expressions that increase agitation:

1. You’re wrong.
2. Do you remember?
3. He/She passed away.
4. What do you want to eat?

Think about it. How many times do these expressions pass your lips. They’re a basic part of communication in most of our lives, but they are triggers for people with dementia and shouldn’t be expressed. It takes reminding oneself but you will get into the swing of it. Remember why you’re providing care for someone you love. Not to ensure that they’re fully aware of the facts of each situation, but to feel safe and loved. The rest doesn’t matter.

So, if they say something wrong, don’t try to convince them of what is right, just change the subject to something pleasant and move on. Don’t ask them to remember things, they can’t, it frustrates them. Just give them the information you want to share with them. So, instead of asking ”Do you remember John Harvey?” get to the point of what you want to communicate. “I saw John Harvey today, who used to live across the street. He said to say hello.” You’ve shared the information you wanted to share without your loved one feeling challenged to remember something and you’ve provided some information that might jog his memory to enable him to share the experience.

When we hear sad news, like the passing of a loved one, it causes pain and sadness. When you don’t remember having gotten the news of the passing, each time you hear the news it causes pain and sadness. There is no point in providing this information over and over. Your loved one can’t remember the news. There is nothing they can do with the information except feel sad. Prolonged sadness will lead to anxiety and frustration. This is the exact opposite of the feeling you want your loved one to feel. So, again, change the subject. When they’re demanding to see someone who has passed you can share a memory you have of the person or change to an entirely different topic. If they can’t move to a new topic, you can just say “He’ll be by later.” Once there is an answer, the question is usually dropped and along with it the frustration and agitation. Your loved one can relax for a bit. They will revisit the question, many more times, but if you are prepared to accept responsibility to divert the conversation to something more pleasant, it will be a better experience for both of you.

Being responsible for menu choices for another person can be tiresome. Often, we don't mind preparing the meal, we just want to know what the person wants. So, we ask: "What would you like to eat?" The question doesn't usually get a helpful response because it requires making a decision. The capacity to make decisions is diminished with dementia and the response to a request for a decision is often followed by agitation, anger, upset and other behaviors that add to a caregivers stress level. A more effective strategy might be for you to plan several days of meals in advance, so each day you don't have to decide what to prepare and when it's actually meal time, inform your loved one that it's time to eat and today we're having grilled cheese sandwiches.

The last tip on communication is to remember to break up information and requests into small bites. Don’t string together a list of things that need to be accomplished before you can both get out the door to go to the park. It won’t be the pleasant day for which you planned. Instead, know the list of things that have to happen before you can get to the park and one at a time instruct your loved one about what needs to be done. “We’re going to the park,” “Go get your shoes.” “Put your shoes on.” “Get your coat.” “Put your coat on.” “Let’s walk to the car.” “Get into the car.” “Put your seat belt on.” “I’m so glad we’re going to the park.” They are capable of accomplishing each step of the journey, but they need direction about each behavior. Sometimes a caregiver will say that the person they care for doesn't want to be told what to do and the agitation is caused by telling him/her. It's possibly true that you're caring for an especially cantankerous person, but most often, the refusal to follow instruction is the result of an inability to process all the information in the instruction.

If you are caring for someone with dementia and can use some support, contact the Agency on Aging of South Central CT and ask to a counselor in the Respite program. There is respite, and counseling and support groups that may be helpful to you. 203 785 8533.