Words? Who Needs Them?
Communicating Through the Dementia Journey
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. The World Health Organization defines the middle stage of dementia as follows:
Middle stage: as dementia progresses to the middle stage, the signs and symptoms become clearer and more restricting. These include:
- becoming forgetful of recent events and people's names
- becoming lost at home
- having increasing difficulty with communication (emphasis mine)
- needing help with personal care
- experiencing behavior changes, including wandering and repeated questioning
We -- those of us not living with dementia -- can help ease the difficulty with communication associated with the middle part of the dementia journey. It all starts with understanding the changes.
How Dementia Changes Language
With dementia, communication 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. The tip of the tongue phenomenon, when we know the word we want but cannot seem to find it, is expressive language. No one’s expressive language is perfect. When one is living with dementia expressive language can shift, sometimes dramatically. Whatever word is available is often used as a substitute. For example, many objects become ‘the thing’ or an elevator becomes ‘the up down up down’.
- Receptive language is the reverse. It is our ability to take words and translate them into meaning. Receptive language happens when you hear the word fork. You know someone is talking about a pronged object used to eat food. Imagining you are learning a foreign language can be helpful in understanding changes in receptive language. When you are learning a foreign language there will be words you do not know yet and cannot connect to their meaning.
- Grammar and syntax rules loosen in the middle stages of dementia. Nouns may be used as verbs. This change is usually the easiest for those of us not living with dementia to translate.
In communicating 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.
With changes in language, it is imperative to stay curious and not assumptive.
When communicating through dementia intention becomes crucial. The field of psychology has a concept called the double bind. A double bind is when our words do not match our sentiment. Think about when someone tells you everything is ‘fine’ but you can tell something is wrong. 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.
Words become an 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. For example, 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 that they wanted to go somewhere in the elevator.
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 and offer a point of connection. Play music from recordings. Make music in community with drum circles and other instruments available.
Any expression based medium works. Seek what connects you and the person you want to communicate with. I have found watercolor to be particularly helpful. Color offers mood and the strokes expression. Sometimes even clear content comes through. There are many support programs to connect through the arts. Check out TimeSlips and AliveInside as a starting point. The field of Expressive Arts Therapy is another great resource.
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.