By Oran Aviv
Last month I wrote several blogs posts about communicating beyond words. I discussed the importance of touch, ways we can connect non-verbally and how there is so much more to humanness than being verbal.
Today’s blog post reminds us that we all know instinctively how to communicate non-verbally, but we need to remember how. We need to relearn how to listen and really care so that we can understand and communicate fully. This is especially important when communicating with a people who are living with dementia.
What is “Oking”?
When my daughter was about one and a half years old, we were in the kitchen. She suddenly got very excited and started staying over and over,” Oking, Oking.”
My older son, who was five years old, was normally very good at understanding his younger sister, but both of us were lost trying to interpret what she was trying to tell us. However, we did understand that this was important to her.
We got down to her eye level and asked her, “What is "Oking”? She sat down on the floor and started moving her hands on the floor tile and continued to say “Oking, Oking!” We were still clueless!
Then my daughter got even more excited and said “Barney Oking, Barney Oking.” With her very limited vocabulary, she was trying so hard to explain to us what “Oking” meant. We tried to think of a Barney the Dinosaur video that might have an episode with a word like “Oking”, but we were lost. We just repeated “Barney Oking” with her but could not understand what she wanted to convey to us.
A bit later, after we finished eating lunch, I used my daughter’s cloth bib to clean her face and I said, “All Clean.” She immediately got excited again and said “Oking, Oking – Barney Oking!”
We finally understood what my daughter was trying to tell us! “Oking” meant “All Clean” and I used her Barney Bib to clean her face – thus the translation of “Barney Oking”!
When I remember this scene, which has become a favorite family story, I realize how intuitively both I and my son used active listening to try to understand my young daughter:
1. We got down to my daughter’s eye level
2. We paraphrased what she was saying
3. We asked questions
4. We showed that we cared about what she was trying to express
I think intuitively we know how to connect with others non-verbally, but our reliance on verbal communication has caused us to neglect this instinct.
We need to remember the power of non-verbal communication and the value of taking the time to understand others, even when language barriers exist. This is especially true when communicating with someone who is living with dementia.
What is Your Intention
The human body's ability to adapt is remarkable. For example, if one hand becomes unavailable, we can learn to use the other hand or even our feet. Additionally, if one of our senses deteriorates, we can develop a stronger reliance on our other senses. In cases of declining cognitive function, to compensate, a person’s emotional recognition becomes stronger.
As cognitive abilities decline, individuals often become more attuned to emotions and feelings, and can sense whether someone is genuinely caring and honest with them or just pretending.
Often a person’s change in behavior may seem sudden and surprising, but they may simply be more sensitive and are reacting strongly to someone who does they sense is not being honest or truly caring for them.
Remember, there is always a reason behind the behavior.
It is important to check your intention. Are you honestly there to care for and help a person, or do you have another agenda that the person may sense and react negatively too.
This is the reason that in Validation we always Center before approaching a client. We remove our own thoughts so we can be 100% there for that old person and connect with them at a deeper, non-verbal level.
Last week I discovered that this is also true with a newborn, who cannot really communicate.
I became a grandmother for the first time. When I visited my grandson after they came home, he had been crying for a while. I was sure that I, as “super grandmother,’ could immediately calm him. I grabbed him, tried all the tricks I did with my own kids to calm him, but I didn’t succeed. I actually felt I had failed as a grandmother… but that was the problem. The whole situation was about me and not him. I think he sensed that.
A few days later I came over, centered first, looked at my beautiful grandson, and he curled up in my arms and slept on me for 3 hours – a long stretch for him. I believe he felt safe knowing I was someone who was there for him.
I certainly can't promise that centering will make a baby sleep well, but babies have a strong emotional sense and if you are honest and truly care, they will feel that.
Where People Remain Verbal
If you have attended our Validation workshops and webinars or have read our other blog post Does Everyone with Dementia Withdraw? you are probably familiar with the Diakonissen Speyer Care Homes in Germany, where individuals living with dementia are validated by all staff members, resulting in residents not regressing to a state of nonverbal communication.
Diakonissen Speyer is a comprehensive provider offering services for the elderly, children and youth, as well as operating hospitals across Germany. Naomi Feil’s Validation method using the attitude of empathy and the Validation techniques have been implemented in 10 of their care homes for the elderly, with all staff members, including managers and janitors, receiving Validation training. Trained Validation workers and volunteers are also present, and families are encouraged to learn Validation as well.
Hedwig Neu, head of Diakonissen Speyer and a Master Validation Teacher, reported that since the implementation of Validation at the care homes, none of the residents have regressed to a state of nonverbal communication.
Consider the impact: at care homes that practice Validation regularly, residents with dementia do not regress to a nonverbal state! They pass away while still able to communicate! However, during the Covid-19 pandemic and resultant isolation, some residents withdrew into nonverbal phases due to being confined to their rooms and not receiving regular Validation.
It makes sense to prioritize preventing nonverbal communication through regular validation sessions, which take only a few minutes each day. Shouldn't this be a part of every care home?
Technology for Non-Verbal Communication (or Oran's trip down the AI rabbit hole)
My mother, who had Frontotemporal Dementia, began having difficulties communicating verbally. She would not remember a word and would use a pronoun instead. As her condition progressed, my mother would replace words with other words and eventually she was not able to communicate verbally at all.
Over 15 years ago, I wondered if there was a technology available to record the person's voice while they were still verbal and then have a board with buttons that the person could press to play a specific recording.
For example an individual could play recordings of themselves telling:
Their name and where they are from
What they like to eat
Their profession and where they worked
Their likes and dislikes
It would be a way to allow a person who has trouble communicating verbally to either press the button themselves or have someone else press it for them.
I hoped that perhaps today there is some sort of technology available so I searched on-line, but could not find anything. I turned to AI (Artificial Intelligence) and was very excited by this answer:
"Yes, there are computerized systems available to help individuals with dementia record themselves and play their answers. The recorded answers can be played back with a simple touch of a button”
I was excited to hear about this and devoted several hours of my blog writing time today to learn about this technology, but I could not find a single article. This was surprising since AI supplied me with a list citations of research papers on the topic, including authors, scientific journals, and dates, yet I could not find any of the articles.
Guess what – the list of AI generated citations looked totally authentic, but they didn't exist!
This is a warning for all of us. With so many people today generating articles directly from AI, always double-check the information with credible sources. – even if AI’s info includes citations!
I’m sure AI based the answers on some research, so I contacted a friend of mine who is a very talented speech pathologist who helped me out of my AI generated rabbit hole. Through her I learned that there is a technology that was developed for people living with ALS called Voice Banking.
The topic is fascinating, and I hope to learn more – this time from reliable sources - and devote a blog on how technology may help with communication for those who have difficulty expressing themselves or are non-verbal.
So how can we learn to improve our listening and communication skills? One way is to be lucky and have a teacher like Carrie Keena who teaches her students to listen. I was not taught how to listen when I was in school, so I was so excited to learn how Carrie not only gives each student the time they need to respond in class, but she also teaches listening skills:
"Best is to be proactive and elicit what they think makes a good listener. Then to practice what you taught! Having kids do turn-and-talk/sharing in pairs is helpful."
Effective non-verbal communication skills are crucial to be able to understand people of all ages, especially when interacting with individuals living with dementia. These skills, however, often need to be reacquired and strengthened. Emphasizing their importance in schools can ensure future generations possess strong communication abilities.
Practice your listening skills, care and connect.
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