Communication in the Late Stages of Dementia
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In this series, we have explored how we can learn from dementia to communicate better and offer the best possible care and support.

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.

Communicating in the Last Stage of Dementia

The World Health Organization describes the last part of the dementia disease progress saying, “the late stage of dementia is one of near-total (inter)dependence and inactivity. Memory disturbances are serious and the physical signs and symptoms become more obvious.”

Communication sees drastic changes 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.

Diagnosing Dementia

People with dementia are diagnosed based on changes in their cognition or thinking. According to the resource psychology uses for diagnosing, there are six domains of thinking measured. If you have changes in more than two, a dementia diagnosis is given. Once you are determined to meet the criteria for dementia the type of dementia will be identified, such as Alzheimer’s or vascular dementia.

The six domains of cognition, or ways of thinking, that are measured are:

  1. Complex attention
  2. Executive functioning
  3. Memory
  4. Language
  5. Perceptual-motor
  6. Social cognition

How Dementia Changes Language

Language changes in three ways:

  1. Expressive
  2. Receptive
  3. Grammar and syntax

These three ways do not change at the same rate for everyone. This means that someone who stops talking may be able to understand or vice versa.

“Why Do People with Dementia Stop Talking?”

The exact neurological reason people living with dementia stop talking will be different for each person. For some people, the part of the brain that controls speech may be damaged from vascular events. For others, the plaques and tangles associated with Alzheimer’s disease may disrupt communication. Because there is no cure for dementia, the ‘why’ for practical purposes does not really matter.

Communication Does Not End

What matters is understanding that changes in language are common with dementia. They do not mean there is no way for communication to happen. Someone who has stopped speaking or has altered speech does not stop communicating.

How to Communicate in the Late Stages of Dementia

Most of my work has been with people in the last stages of dementia. 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.

Process vs. Content

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, the verbal message. The process is how we say it, the nonverbal message. Oftentimes, 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) oftentimes the content is what changes. For example, someone says ‘shoe’ when they mean ‘boat’. The process stays.

Thingy Story

One person I knew only had access to the word ‘thingy’ They would create whole sentences out of the word. The amazing thing was if I went with it, if I did not get caught up in trying to translate each ‘thingy,’ I could usually understand what they were saying. This person’s receptive language, their ability to translate my words into meaning, was sharp. They ended up joining a philosophy group some elders started. Gradually, everyone began to understand these ‘thingy’ sentences.

Communication came through the process:

  1. Body language
  2. Facial expressions
  3. Contextual clues
  4. Tone of voice
  5. Felt sense
  6. And more I do not have words for

How to be Understood Without Words

This works in the reverse as well. When you want to be understood by someone living with dementia, be aware of your body language, contextual clues, tone, how you feel etc.

For example, if you want to talk about eating, do so in the kitchen or dining room to provide contextual clues. Use your body to express what you are talking about by motioning like you are eating. Finally, make sure your inner thoughts and feelings match what you are trying to say.

Process Work

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 Superpower of Gist

Want to never have another 'senior moment'?

In his non-fiction theater show, Life’s Most Dangerous Game, part of the ChangingAging Tour, Dr. Bill Thomas promises just that.

The audience participates in a game show-style rendition of the work of Daniel Kahneman. They follow 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 is 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!

The cure for the ‘Senior Moment’.

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.”

Gist and Dementia

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!

Exiting the elevator onto a secure memory care floor a woman my colleague and I knew well approached us. She put her hands to my colleague’s belly and then rocked her arms as if holding a baby. Earlier that day my colleague had taken a positive pregnancy test, she hadn't told anyone yet, not even her husband. That is gist to the extreme.

In practice, this means we need to be really clear about how we are communicating with our bodies and our feelings, the process of our communication.

A Gist Story

When I was working in long-term care I got a bit of a reputation of being a ‘dementia whisperer’. This meant I was able to help translate the unmet needs and desires of the people who lived there. It also meant that whenever the administration wanted someone to do something they did not want to do they came to me.

One day they wanted someone I was close with to go to the doctors but she refused. They asked me to go get her. I arrived on her floor and she walked toward me to greet me as she usually did. But, after taking a few paces toward me, she turned on her heel and walked straight to the nearest room and shut the door.

Her gist power, listening to among other things my nonverbal signals, told her I was there with an agenda and not one she agreed with. I reported back.

I was told if she didn’t come willingly they would sedate her, enticing her with chocolate ice cream with medication for sprinkles.

I knew her gist power would on some level register the trick and it would erode her sense of trust and comfort in what was now her home.

I asked to try again. I cleared myself of the intent to get her to leave and filled myself with the intent to communicate her options. I knocked and entered the room she was in. I sat across the room from her. I described the situation to her. I told her I wished she didn’t have to go. I told her that the ice cream had medicine on it and that if I were her I would eat it, might as well be relaxed for something unpleasant.

I told her all this in words, content. I also told her with my heart and body, utilizing process. I have no way of knowing if she understood. I trusted her gist power. I also told her with feeling, making sure that what I was feeling inside matched the words I was saying. I was honest and transparent.

She crossed the room and looked at me for a long time then took the ice cream, ate it and laid her head on my shoulder. I have no idea how many of my words got through. I hope her gist power told her what to do for the situation to have the least total suffering.

In the late stages of dementia, words may not be there for communication but gist power is. Trust the gist. Do this by making sure what you are saying matches what you are feeling and your body language. Trust that, at some level, you are being understood.

Nonverbal Communication Techniques with Dementia

When speaking can no longer be relied upon as the best form of communication, in the late stages of dementia we can use non-verbal communication to bond and connect. Here is what to remember:

  1. Drop expectations. Do your best to treat each day as a new day and be curious about who is here today.
  2. Use art. Colors, shapes, and gestures can communicate moods and feelings.
  3. Trust gist. Since frequently our intuition increases as our cognition decreases be sure that what you feel matches what you are saying. This will help the non-verbal and intuitive cues you give to be aligned with what you want to communicate and will allow the person living with dementia’s gist power to work.
  4. When content fails, trust the process. Rely on body language, tone, felt sense etc. to understand. Also, make sure you are communicating back with these.
  5. Communicate through not around dementia. Each person will be different, so be on this path with them and learn how to best communicate with them. Do not try to conform their communication to our mainstream words and sentences.

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.


What's in a Dementia Diagnosis: 6 domains of cognition

Video: What's in a Dementia Diagnosis

Neurocognitive Disorder is the New Dementia

10 Types of Dementia Explained

Video: 10 Types of Dementia Explained

ChangingAging Tour

About the Author(s)

Kyrié is a radically age and dementia positive coach and thinker. Her passion for story led her to a career in film, studies in Depth Psychology, and ultimately her work with aging. Kyrié calls herself a crone in-training because she believes our world needs elders and we need to train to become them. She is a book author and blog contributor for multiple platforms.

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