Ten Things Not to Say to Someone with Dementia  

Words Matter

Words matter. When communicating with someone with Alzheimer’s disease or another dementia, we must be mindful of the reaction we create with the words we use. That is right, the reaction we create. People with dementia are often blamed for expressing resistance or anger, but there are two people in every communication, and the outcome depends on both the sender and the receiver. What we say and how we say it tees up an emotional response, with or without dementia. "Hey you, get over here" sends a vastly different message than "Hello, would you mind coming over here?"

This piece focuses on word selection, but stay just as aware of your nonverbal communication, your tone of voice and body language. They are just as impactful as the words.

Phrases to Avoid: Control, Questions, and Memory

Avoid demanding language, such as "Stop, leave that alone," "No, do it like this," or "Come with me." These words take control away, and the person can feel devalued or threatened, creating a resistive reaction. Ask permission and give choices instead. "Would you mind waiting here?"

Limit open-ended questions like "What would you like to do today?" Abstract thinking is not a strength in dementia, and limitless response options overwhelm. Ask simple, closed-ended questions with a choice of two. "Would you like to wear this blue sweater or this yellow shirt?"

Do not test memory or challenge recall. "We already had this discussion, what did I tell you yesterday?" and the dreaded "Don’t you remember?" test and challenge, creating anxiety and distress for someone with memory loss. Sometimes this kind of questioning reflects a caregiver’s own difficulty accepting the condition. Accept memory limitations as part of the disease, do not take them personally, and support instead. Give the information again, remind and prompt, then gently ask. "Millie, yesterday I showed you where I put your toothbrush. It is right here in this cabinet. Can you get it out?"

Keep sentences short and directions simple. "Find your seat in the dining room, set your things down, then go and get your plate by the end of the buffet line" fails because attention and memory decline make a two or three step direction too challenging. Use one or two steps, let the person respond, then continue.

Avoid pronouns. Using she, he, or it requires very good short-term memory, which dementia affects early. Use the noun every time, however redundant it sounds. "Bob is coming later today to see you. Bob said he would be here for dinner."

Phrases to Avoid: Reality, and One Question Everyone Asks

Avoid harsh reality orientation. "Why are you looking for her? She is dead" causes real emotional pain, because the person does not recall the death and hears the news as if for the first time. If they did not remember, they will not remember next time either, so there is no benefit to the correction. Enter the person’s reality instead. Validate the emotion, then try to fill the want or need the missing person or pet once filled. "I know how much you loved Fido, and Fido loved you." Then redirect to something that offers connection and security.

The question I am asked most often is whether to tell a loved one they have dementia. There is no right or wrong answer. Decide based on who the person has always been. Would they rather know, or prefer to be shielded from difficult news? If you do tell them, make it a team approach with a trusted medical professional or loved ones present, because it is a tough conversation and everyone will need support.

Communication is one of the most important skills dementia training builds. Know what to say, how to say it, and what your words do to how the person feels and reacts. If your words seem to create confusion or a negative reaction, start over and adjust. When compassion, patience, and skill combine in your communication, people living with dementia can thrive. You, and your words, are powerful.