How to Effectively Communicate During Late-Stage Dementia

The World Health Organisation describes the last stage of the dementia disease process 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.” Ageing in place requires specialised in home care at this stage.

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 still possible through the entire journey with dementia.

Diagnosing Dementia

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

How Dementia Changes Language

When providing care for the elderly with Dementia, we can see their language changes in three ways – expressive, receptive and grammar and syntax.  These three ways do not change at the same rate for everyone. This means that someone who stops talking(expressive) may be able to understand(receptive) 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.

What matters to those providing in home and aged care services to those with dementia is understanding that changes in language are common with dementia. It does not mean there is no way for communication to happen.

How to Communicate in the Late Stages of Dementia

Someone who has stopped speaking or has altered speech does not stop communicating. It is possible to communicate beyond language.

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.

We have all had that experience when communicating via text message where the true meaning of what we 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 the same.

There have been cases noted where a person with late stage dementia has only had access to one word, in one example of someone receiving home care assistance,  it was ‘thingy’.  Entire sentences would be spoken made up of only that one word. Amazingly, they could still be understood if their carers and aged care providers did not get caught up in trying to translate each ‘thingy,’ but simply went with it.  Communication came through the process and meaning was gained via:

  1. Body language
  2. Facial expressions
  3. Contextual clues
  4. Tone of voice
  5. Felt sense

How to be Understood Without Words

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

For example, if we are providing in home care services and we want to talk about eating, its best to do so in the kitchen or dining room to provide contextual cues. We can also use our bodies by motioning like we are eating. Finally, we need to ensure our inner thoughts and feelings match what we are trying to say.

Process Work

So often in the context of late-stage dementia people, including family and even those in aged care or in home health care roles,  are unsure of 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. It works no matter where on the journey someone is and is a moving and healing way of being with another person (with or without dementia).

The Superpower of Gist

Gist is the story behind the story.  If we reflect on our teenage years, we can all recall those “What was I thinking? Moments.  How did we not see how that wrong boyfriend or bad job would turn out?” We couldn’t know then because we didn’t have our gist power yet.

Our brains are like filing cabinets and when we are young it is easy to keep it all organised. As we age it gets filled with the most interesting and random stuff, making it harder to do certain simple tasks, but offers us increased gist.

Gist and Dementia

The gist phenomenon is present in the experience of dementia. As one’s cognition decreases, 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.  There are many examples of people with significant dementia whose intuition is off the charts, such as:

“Exiting the elevator onto a secure memory care floor in aged care near me,  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.

What this means is we need to be really clear about how we are communicating with our bodies and our feelings when providing care for the elderly with dementia – in other words being conscious of  the process of communication.

A Gist Story

“When I was working in long-term aged 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 and received care in the home. 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 her place of in home health care.

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, utilising 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 as I discussed her aged care services.

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. We can do this by making sure what we are saying matches what we are feeling and through our body language. Trust that, at some level, we are being understood.

Nonverbal Communication Techniques with Dementia

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

  1. Drop expectations. Treat each day as a new day and be curious about who is here today.
  2. Use art. Colours, shapes, and gestures can communicate moods and feelings.
  3. Trust gist. Since frequently our intuition increases as our cognition decreases be sure that what we feel matches what we are saying. This will help the non-verbal and intuitive cues we give to be aligned with what we 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, communicate back with the same.
  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 we can do to communicate through dementia (not around it) is to be present. Stay curious about what we can learn from dementia about communication. Listen with our heart, as well as our ears. A person’s body and voice can speak louder than their words. Be with someone in their reality and respect and delight in the differences. These lessons help make us better communicators with all people.


The later stages of dementia

Fact Sheet: Communication with Dementia

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

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