“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 capacity changes as dementia progresses, in fact half of the cognitive changes associated with dementia involve communication. We can see these changes as a barrier, or an opportunity. If we understand these changes better as we care for the elderly, then we can help ease the communication difficulties faced by people with dementia.
How Dementia Changes Language
Dementia changes the use of language in three ways: expressive language, receptive language, and grammar and syntax.
Expressive language is our ability to say the words we want to communicate in a given moment. We have all experienced the ‘tip of the tongue phenomenon’, when we know the word we want but cannot seem to find it. This is an example of an expressive language hiccup. For people with dementia, the ability to utilise 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 to the thing to thing the things?”
- A lift in an aged care facility 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.
- Recognise replacement words or synonyms. A person with dementia may 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:
- Whilst providing in home care for a person with dementia, they ask, “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:
- Realise 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. Utilise 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, by which many people are receiving in home care services. 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. A person who can speak eloquently (expressive language) may still have 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 providing care for the elderly with dementia.
When communicating through dementia, intention becomes crucial. Your intent is often communicated nonverbally through body language, facial expressions, tone of voice, and energy. 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 the in home care support and aged care services needed the way you thought it would and are having a really tough day.
- While visiting a loved one in long term aged 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. Those experienced in home care services for people with dementia try listening with “metaphorical ears”, a bit like listening to poetry. This means you 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:
- A person in an aged care facility might be pacing and repeating “the up down, the up down”. In context, they want to go somewhere in the lift.
- 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.
- Sometimes people make 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, and when words no longer serve us, art can be a great alternative medium for communication.
- Singing songs or even just listening to themhelps 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. Create a play list for an individual.
- Painting can be effective to convey emotions and feelings through colour and expression through brushstrokes. The content can be surprisingly clear at times.
- Acting things out can 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.
Key tips to Communicating through 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.
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