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Chapter 5

Effective Communication in Late Stage Dementia

Photo: older gentleman smiling In this series, we have explored how we can learn from dementia to communicate better. Early in the journey with dementia, we learn to drop expectations. We learn to borrow from improv comedy the concept of ‘yes, and…’ and we began to cultivate our skills of being with. During the middle of the journey, we learn to rely on the arts as a bridge for communication and connection. The World Health Organization describes the last part of the dementia journey saying, “the late stage of dementia is one of near total dependence and inactivity. Memory disturbances are serious and the physical signs and symptoms become more obvious.” Communication changes drastically near the end of the dementia journey. We learn that words are not necessary for communication and have to develop other ways of connecting. Communication is possible through the entire journey with dementia.

The Superpower of Gist

In his non-fiction theater show, Life’s Most Dangerous Game part of the ChangingAging Tour, Dr. Bill Thomas promises the audience after the show they will never have another ‘senior moment’. The audience participates in a game show style rendition of the work of Daniel Kahneman. The audience follows a set of instructions to come up with the next number in a sequence.
Research shows that younger people are able to do this faster than older people. Dr. Thomas offers one explanation being that, “the very beginning of wisdom is knowing a silly game when you see one and choosing not to play.”
Thomas reveals that Kahneman and his colleagues went farther. They showed that older people were better than younger people at understanding gist. What is gist? Gist is the story behind the story. Look back on your teenage years. Are there moments where you wonder, "What was I thinking? How did I not see how that wrong boyfriend or bad job would turn out?” You couldn’t know then because you didn’t have your gist power yet. Dr. Thomas explains that our brains are like filing cabinets. When we are young it is easy to keep it all organized. As we age it gets filled with the most interesting and random stuff. This makes it harder to do tasks such as the number prediction in the study but offers us increased gist. At the end of the skit, Dr. Thomas asks the audience if they would rather have gist or be able to do math a little bit faster. The answer is always gist!
At this point Dr. Thomas offers the cure to the ‘Senior Moment’. He says, “ The next time you are out at dinner and you can’t find the word you are looking for lean back in your chair and say, “That is my gist superpower working. Yeah, I am kind of awesome.”
The gist phenomenon is present in the experience of dementia. As one’s cognition decreases, their intuition increases. This effect appears similar to the phenomenon of when we lose one sense, such as sight, the others go into overdrive, such as hearing. The elders I have had the pleasure of spending time with had gist power that was off the charts! I have more anecdotes than I can count of times when an elder knew something no one had told them.

How to Communicate: Process vs. Content

Most of my work has been with people who have been living with dementia for quite some time. Process work is an invaluable gateway for connection and communication. Writing about how to communicate beyond language is inherently difficult. This work is much more something that you feel than know. I will do my best and hope the ‘gist’ comes across. Anytime we communicate with each other there are two main elements to the communication, the content and the process. The content is what we say and the process is how we say it. Often times the process carries even more meaning than the content. Think about a time when you were communicating via text message when the true meaning of what you were trying to say was misunderstood. The content came through but the process was lost. In the language changes associated with dementia (both expressive and receptive) often times the content is what changes. One says ‘shoe’ when they mean ‘boat’. The process stays. I have had deep meaningful conversations where more than every other word was ‘thingy’. Communication came through in body language, contextual clues, tone and my own felt sense, in short, the process. I learned about process work through my studies in Depth Psychology. The founders of Process Oriented Psychotherapy are Arny and Amy Mindell. So often in the context of late-stage dementia I hear people who are not sure what to ‘do’ when spending time with their loved one. Process work offers a 'what to do' in a way that moves us away from doing and towards being. Arny and Amy Mindell even work with people near death and in comas using their method. It works no matter where on the journey someone is.
Amy speaks to this work, “more than almost anything else in my life; being so close to people as they were going through these deep altered states, sometimes very near to death. I think I learned more about the essence of life and the essence of death from those experiences than anywhere else in my life; it was incredibly moving.”
Process work is a moving and healing way of being with another person (with or without dementia). The single greatest thing you can do to communicate through dementia (not around it) is to be present. Stay curious about what you can learn from dementia about communication. I have learned to listen with my heart as well as my ears. I have learned that a person's body and voice speak more loudly than their words. I have learned how to be with someone in their reality and to respect and delight in the differences. These lessons have helped me to be a better communicator with all people.

Other Chapters in Dementia Care Guide: Strategies for Providing Compassionate, Effective Dementia Care:

  • Chapter 1

    How Vision Changes with Dementia

  • Chapter 2

    Can Dementia Come And Go?

  • Chapter 3

    Communication in the Early Stages of Dementia

  • Chapter 4

    Communication in the Middle Stages of the Dementia Journey

  • Chapter 5

    Effective Communication in Late Stage Dementia

  • Chapter 6

    Strategies for Dealing with Sundowners Syndrome (aka Sundowning) in Seniors

  • Chapter 7

    Try This Instead of Antipsychotic Drugs for Paranoia in Dementia


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