adaptive interaction nonverbal communication dementia

When Speech Is Gone: A Method for Nonverbal Communication in Dementia

By Elizabeth Hewitt | October 10th, 2022

Adaptive interaction — a way of communicating that involves mirroring a person's actions — is helping carers connect with nonverbal people living with dementia. Easy for family members and caregivers to learn, researchers say the approach can provide social contact even in dementia’s advanced stages.

Around the time Martin Philips’s wife Linda stopped speaking, he was puzzled by a new behavior. Linda, who had been diagnosed with Lewy body dementia in 2017, would rub her hand rapidly on different surfaces: the arm of her chair, the bedspread, Philips’s arm.

He asked his caregiver support group, speculating that it might mean she was cold, or worse, in pain. Then, in a training he took on caring for people living with dementia who are nonverbal, instructor Dr. Maggie Ellis suggested that Linda’s rubbing may be a way of communicating.

The next time Linda rubbed, Philips rubbed back.

“It changed my life immensely,” Philips said, “because I knew she was still in there.”

Philips was practicing adaptive interaction, a communication approach that draws on actions like body movements and sounds to connect with people living with advanced dementia who no longer are capable of speech.

According to Ellis, a senior lecturer in psychology at the University of St. Andrews, the technique challenges misconceptions that people who are nonverbal are shut off from the world. Research finds that the approach could be useful in care home settings: helping reduce social isolation, improving quality of life, and giving opportunities for people living with dementia to connect with caregivers.

“It helps family members and professional caregivers to understand more about what is possible and retained for people with advanced dementia,” said Ellis.

How intensive interaction leads to adaptive interaction

Ellis and Dr. Arlene Astell developed the approach based on a method for communicating with people with developmental disabilities, called Intensive Interaction.

For people living with advanced dementia who are no longer capable of speech, actions like repetitive tapping, crying out, or bodily movements are sometimes seen as random — or even “problem behaviors.” Adaptive Interaction instead sees them as potentially communicative, Ellis explained. By paying attention to the actions and mood of the person living with dementia, and mirroring these back, Ellis and Astell found that the method provides an opportunity for people who cannot speak to communicate in another way.

Ellis first applied the principles of Adaptive Interaction with a woman living with dementia named Edie, at the request of Edie’s daughter. Edie lived in a care home, where she spent most of her time isolated in her room. She made a loud noise that staff and residents found disturbing.

“[To them], it was just a problem that needed to be solved, and the way to solve it was to keep her in a room so no one heard this sound,” Ellis said.

When Ellis visited, she observed and mirrored Edie’s actions, including repeating back a version of her noise. Instantly, Edie responded positively: laughing, smiling, and seeking out bodily contact.

“Although we didn’t say anything to each other apart from ‘I see you’ and ‘you see me,’ it was one of the most touching experiences, I think, of my life,” she said.

Actions vary between individuals, Ellis noted. One man tapped patterns on a wooden table. Another woman touched Ellis’ hands and fingers. Other people used very pronounced facial expressions.

Adaptive interaction has the potential to support family members of people living with dementia and professional caregivers, Ellis said. Care home workers can incorporate the techniques in routine interactions — like using the bathroom or eating meals. 

For family members, there are emotional benefits, notes Martin, who cared for his wife Linda at home until her death in November 2021. It can be difficult to know what actions are communicative, Martin said, but he believed the approach helped them connect.

“I know Linda felt comfortable,” he said. “I think she felt safe.”

Ellis has trained more than 70 people in Adaptive Interaction, including professionals and family caregivers. The approach draws on interactions from early stages of infancy, when parents connect with babies through imitation of facial expressions, sounds, and movements. However, Ellis noted, while those actions come easily when interacting with babies, it can feel awkward or uncomfortable to mimic sounds and body movements with an adult.

“Once you see a reaction with someone, it’s almost as though all those concerns fall away,” she said.

Unlike intensive interaction, which aims to build relationships with people with developmental disabilities, adaptive interaction doesn’t expect that a participant with advanced dementia will remember an interaction from day to day. Some people are more communicative than others. People also communicate differently day to day, or even at different times of the day.

“It’s about connecting with the person, absolutely, in that moment, wherever you meet them,” Ellis said.

An intuitive approach

For Dr. Fiona Perella, a clinical psychologist who works with people living with dementia in Surrey, England, the Adaptive Interaction approach was intuitive. When she went through the training, she realized she’d naturally tried to connect with people on prior occasions by mirroring their movements. In one case, she’d bonded with a man who would not look up at her by sitting next to him and moving her feet in a similar pattern. 

“We were essentially doing a sat-down dance next to each other,” she said. “He was smiling and he was sat up and he was looking around the room.”

Part of what makes adaptive interaction effective, she said, is how it directly engages people living with dementia.

A year ago, Perella used the approach with a woman living with posterior cortical atrophy at a care home in Surrey, England. Largely bedbound, she had been biting and scratching. Her speech was very limited, and, apart from screaming, she only spoke with a few words.

As Perella sat with her, she noticed the woman’s tendency of repeating a series of small claps. So Perella joined her. When the woman clapped, Perella clapped in a similar way. When the woman used the words “Yes, it is,” Perella responded in kind, mirroring her tone and inflection. 

After a few minutes of communicating, the woman physically relaxed and her eyes brightened. Perella flipped the phrase: “Is it?” The woman responded with an expression of happy surprise. “Yes,” she said, “it is.”

For the woman, personal care and hygiene were particularly distressing. Unlike those activities, which care staff would attend to and leave, the exchange using Adaptive Interaction directly engaged the woman.

“It wasn’t done to her. It wasn’t around her or despite her,” Perella said. “It was with her and led by her.”

Perella believes it’s important for people using adaptive interaction to genuinely want to connect and communicate with the person living with dementia. Just mimicking the person without that intention can feel like mocking or infantilizing.

Perella sees adaptive interaction as empowering and validating. 

“It’s just about joining the person and actually putting them in charge of that interaction,” she said. “It honors their remaining abilities, which I think is what we need to be doing.”

Elizabeth Hewitt is an American journalist based in the Netherlands, reporting on aging, nature and culture. @emhew

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