Breakdowns in communication are a major source of burnout for people who take care of people living with dementia. When people who have dementia don't understand what is being done for them, they aren't appreciative of caregiver effort. They may become resistant, aggressive, or even violent. Communication makes a huge difference for both everyone involved.
Because of the progressive nature of the disease, it's not possible to restore abilities to communicate the way it sometimes is after stroke or traumatic brain injury. It is possible, however, to "treat the caregiver" to enable easier communications. You may not be able to change the patient, but you can change your approach.
Before you speak:
- Don't make assumptions about someone's ability to communicate before you have your first conversation with them. Especially in the early stages, dementia affects different people in very different ways.
- Make sure you can be heard. No television or loud conversations in the background. Get the person's full attention.
- Make sure the person you are caring for can see you. It's important that your face is well-lit.
- Try to avoid starting conversations when you are rushed. If you feel stressed, calm yourself before dealing with someone who has dementia.
- Think about what you are going to talk about before you start the conversation.
- When dealing with people who sundown, try to have important conversations in the morning.
- Make sure other needs (food, using the toilet, pain medication) are met before trying to have a conversation.
As you speak:
- Be calm. Avoid raising your voice unless it is to compensate for deafness.
- Speak clearly. Use short, simple sentences. Ask questions that have one-word answers.
- Don't talk about the person you are giving care as if they weren't there. Don't treat them like a child. Give them space to respond to you even if they have difficulty forming words. The inability to speak fluently does not always mean there is an inability to think fluently.
- Without being either self-deprecating or making fun of the person you are helping, include humor in your conversations. Allow patients to share good-natured humor with you.
- Include the dementia patients in conversations with others. This may mean long pauses while they formulate the sentences they wish to add to the conversation. There will be topics you can't politely discuss in their presence.
Keep in mind during your conversation:
- When someone who has dementia can't understand you, consider breaking down your comment or suggestion into smaller segments.
- Give people who are living with dementia choices, but not too many choices. Keep your conversation to "Would you prefer this or that?" rather than "What do you want if....?"
- Avoid questions that require nuanced answers, or that require explaining emotions or personal history or taking a stand on controversial issues. People who deal with major neurocognitive disorders may withdraw from you to deal with their frustration with their inability to speak in complex sentences.
- Avoid questions that require searching for vocabulary. For instance, ask "Would you like coffee or tea?" rather than "What would you like to drink?"
- When you aren't understood, rephrase, don't repeat. Asking the same question or making the same comment or giving the same instruction in slightly different language may jog the memory for vocabulary words. If someone doesn't understand you the first time, simply repeating yourself won't necessarily help them.
- Keep in mind that some people who have dementia find conversation tiring. When you sense conversation fatigue, keep the conversation short. Be alert to signs they are tired and want to do something else for a while.
- When someone who has dementia says something that is not true, look for the meaning behind their statement. Avoid directly contradicting them as much as possible. Suggest what you think they really want to find out if they just couldn't express themselves.
- When someone who has dementia makes an impossible request, such as saying they want to go to work, or they want to visit a deceased spouse or loved one, consider deeper meaning. For instance, if someone says they want to go back to their job, does that mean that they are bored? Worried about finances? Do they miss their old friends at work? Are they experiencing profound grief? Find possible answers for impossible desires.
- Be aware of veiled meanings. Suicide is not unknown in people in the early and middle stages of dementia. Take any indications of self-harm seriously but calmly.