“Many think it is the disease that causes us to withdraw, and to some extent, I believe this is true. But, for many of us, we withdraw because we are not provided with meaningful opportunities that allow us to continue to experience joy, purpose, and engagement in life”. - Dr. Richard Taylor
Communication changes as dementia progresses. Half of the cognitive changes associated with dementia involve communication. We can see these changes as a barrier... or an opportunity.
We -- those of us not living with dementia -- can help ease the difficulty with communication. It all starts with understanding the changes.
How Dementia Changes Language
Dementia changes the use of language in three ways. Expressive language, receptive language, and grammar and syntax are altered.
Expressive language is our ability to say what words we want to communicate in a given moment. This is known as the tip of the tongue phenomenon. When we know the word we want but cannot seem to find it is an expressive language hiccup. No one’s expressive language is perfect. For people with dementia, the ability to utilize expressive language can change, sometimes in dramatic ways.
Examples of expressive language changes:
- Many objects become ‘the thing’ or another accessible word. The sentence “Can we go to the store to buy apples?” Becomes “Can we go the thing to thing the things?”
- An elevator is referred to as ‘the up down up down.”
What to do:
- Don’t try to correct them. This will only increase anxiety making the words harder to find.
- Do try to understand. If possible, ask clarifying, but simple questions.
- Offer other ways of communicating. Try pointing to a picture card, writing answers down, giving multiple choice questions, asking them to act it out, draw it, or sing what they are trying to communicate.
- Recognize replacement words or synonyms. Know that the person with dementia will use synonyms instead of the actual word, or whatever word is available at the moment.
- Take context into account. Paying attention to context can be helpful here as well as trying to listen to the intent.
- Understand that frustration can bring about nonsensical words. When none of the desired words are accessible, speech may turn into a stream of seemingly nonsensical words. Even in this instance, listening for tone and themes can be very helpful in understanding.
Receptive language is the reverse. It is our ability to take words and translate them into meaning. For example, when you hear the word “fork” you know someone is talking about a pronged object used to eat food. Imagine you are learning a foreign language. There will be words you do not know yet and cannot connect to their meaning.
Examples of receptive language changes:
- A person with dementia asks “When are we eating dinner?” You answer “In a few hours.” They look at you confused, and ask, “When are we eating dinner?”
What to do:
- Realize it can be a different language to them. Know that for them, it is as if they asked you a question in English, but you answered in a language they do not speak.
- Your loved one is unique. Each person's brain will change in a different way. Experiment with your loved one and try different approaches until one works.
- Don’t get angry. While they may not understand your words, they will understand your tone. They are likely to be sad and confused when they feel your anger with them.
- Find other ways of communicating. Utilize gestures, pictures, music, or writing.
- Take what they say seriously. Just because they cannot understand you, does not mean they do not know what they are saying.
Grammar and Syntax
Grammar and syntax rules loosen in the middle stages of dementia. For example, nouns may be used as verbs. This change is usually the easiest for those of us not living with dementia to translate.
Examples of grammar and syntax changes:
- “When can we go to the park today?” could become “Parking today when?”
What to do:
- Be patient. Exercise patience with yourself and them.
- Do not try to correct their grammar. Trying to correct their grammar may cause confusion or frustration.
- Do take their communication seriously. Try to understand what they are communicating to you, and take it seriously.
When communicating with someone with dementia, not all three changes will always be present, and they may be present in varying degrees.
Someone can speak eloquently (expressive language) while having a hard time understanding what others say (receptive language).
In contrast, if someone is having a challenging time finding the words they want (expressive language), this does not mean that they do not understand what is being said to them (receptive language).
With changes in language, it is imperative to stay curious and not assumptive.
When communicating through dementia, intention becomes crucial. Your intent is often communicated nonverbally through body language, facial expressions, tone of voice, and energetically. The field of psychology has a concept called “the double bind.” A double bind is when our words do not match our sentiment.
Common double binds:
- You are asked “Are you okay?” And you answer, “I’m great.” When in reality, you just found out your insurance isn’t going to cover care support the way you thought it would and are having a really tough day.
- While visiting a loved one in long term care, to soothe them you say, “You can go home tomorrow!” You say this, but deep inside you feel a pang of sadness knowing that the home they want to go back to has been sold and that this is their home now.
- “It’s fine” you reply when your loved one is feeling sad about their own changes and the way they impact you. In reality, it is not fine. You love them and this journey is really hard for both of you.
The more adept your intuition, the more damaging double binds are. Being double bound, for any of us, feels confusing and can make us feel as if we do not understand reality. In the context of dementia, this can be extremely distressing. Make sure what you feel and what you say match.
For the above examples here is what you could say instead:
- “I am having a hard day, I think it will all be okay though.”
- “It is hard missing home, I miss your old home too.”
- “Thank you for saying that, it is hard but that doesn’t change how much I love you. I know you would do the same for me.”
How to Listen to Someone Living With Dementia
Words become increasingly unreliable as a form of communication in the context of dementia. Try listening with metaphorical ears (versus literal ones). I find it helpful to place my mindset as if I am listening to poetry. Allow all the words to flow in. Then let your intuition interpret their meaning and communication. These ‘poems’ often offer clues to unmet needs.
Examples of metaphorical communication:
- An elder I worked with was pacing and repeating “the up down, the up down”. What was usually classed as ‘word salad’ when listened to metaphorically and in context became clear. They wanted to go somewhere in the elevator.
- The common desire to ‘go home’ looked at metaphorically can be answered by being curious about what home means. Think about how to create a feeling of home wherever you are.
- Another elder I worked with often made comments about the appearance of staff and sexual desires. Looked at metaphorically, this can be seen as a need for intimacy or connection. More one-on-one time and talking about intimacy was helpful in decreasing these unwanted advances.
Communicating Through Art
Communication is a way for us to connect with one another, human to human. This connection eases the existential angst inherent in our existence. Dementia has taught me that words are not required for this purpose. When words no longer serve us, art, which speaks to us throughout our lives, can be a medium for communication.
- Songs communicate. When working in long-term care, I crafted a playlist of favorite songs of the elders I worked with. Listening to a special song touches the heart. Listening (and sometimes singing along) with others helps us to feel seen, heard and held. Music can express a mood or shift a mood. It can also offer a point of connection. Play music from recordings. Make music in community drum circles or with other instruments.
- Colors convey emotions and feelings. I have found watercolor to be particularly helpful. Color offers mood and the strokes expression. Sometimes even clear content comes through.
- Act it out. Try acting things out to help bridge the gap left by words. Bring the same playful attitude you would to a game of charades or Pictionary to help ward off frustration and increase curiosity.
There are many support programs to connect through the arts. Any expression based medium works. Seek what connects you and the person you want to communicate with. Check out TimeSlips and AliveInside as a starting point. The field of Expressive Arts Therapy is another great resource.
Quick Tips on How to Talk to Someone with Dementia
- Don’t try to correct.
- Do try to understand.
- Don’t get angry.
- Do find other ways of communicating.
- Do take what they say seriously.
- Do make sure what you feel and what you say match.
- Do listen metaphorically and search for the meaning beyond words.
Dementia does not have to be synonymous with withdrawal. Let us learn from Dr. Richard Taylor, quoted at the beginning of this article. The first step in providing ‘meaningful opportunities to experience joy, purpose, and engagement in life’ is to communicate beyond words.