When Speech Is Gone: a method of non-verbal communication in dementia

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By Elizabeth Hewitt | October 10, 2022

Adaptive interaction – a way of communicating that involves mirroring a person’s actions – helps caregivers connect with non-verbal people with dementia.

Easy to learn for family members and caregivers, researchers say the approach can provide social contact even in advanced stages of dementia.

Around the time Martin Philips’ wife, Linda, stopped talking, he was puzzled by a new behavior. Linda, who was diagnosed with Lewy body dementia in 2017, quickly rubbed her hand on different surfaces: the arm of her chair, the bedspread, Philips’ arm.

He asked his caregiver support group, speculating it could mean she was cold, or worse, in pain. Then, as part of a training he took to deal with people with dementia who are non-verbal, instructor Dr. Maggie Ellis suggested that Linda’s rubbing could be a means of communication. .

The next time Linda rubbed, Philips rubbed back.

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

Philips practiced adaptive interaction, a communication approach that relies on actions such as body movement and sound to connect with people with advanced dementia who are no longer able to speak.

According to Ellis, a lecturer in psychology at the University of St. Andrews, the technique challenges misconceptions that nonverbal people are cut off from the world. To research finds that the approach could be useful in nursing homes: helping to reduce social isolation, improving quality of life and giving people with dementia the chance to connect with caregivers.

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

How Intensive Interaction Leads to Adaptive Interaction

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

For people with advanced dementia who are no longer able to speak, actions such as repetitive tapping, shouting or body movement are sometimes considered random or even “problematic behaviors”. Adaptive Interaction sees them as potentially communicative instead, Ellis explained. By paying attention to and reflecting the actions and mood of the person with dementia, Ellis and Astell found that the method allows people who cannot speak to communicate in another way.

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

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

During Ellis’ visit, she observed and mirrored Edie’s actions, including repeating a version of her noise. Instantly, Edie responded positively: laughing, smiling and seeking body contact.

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

Actions vary from individual to individual, Ellis noted. A 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 with dementia and professional caregivers, Ellis said. Nursing home workers can incorporate the techniques into routine interactions, such as 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 which actions are communicative, said said Martin, but he thought the approach helped them connect.

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

Ellis has trained over 70 people in adaptive interaction, including professionals and family caregivers. The approach builds on interactions from the earliest stages of infancy, when parents connect with babies through imitation of facial expressions, sounds and movements. However, Ellis noted, while these actions occur easily when interacting with babies, it can be awkward or uncomfortable to mimic sounds and body movements with an adult.

“Once you see a reaction in someone, it’s almost like all that worrying goes away,” she said.

Unlike Intensive Interaction, which aims to build relationships with people with intellectual disabilities, Adaptive Interaction does not expect a participant with advanced dementia to remember a day-to-day interaction. . Some people are more communicative than others. People also communicate differently from day to day, and 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 with dementia in Surrey, England, the adaptive interaction approach was intuitive. When she took the training, she realized that she had naturally tried to connect with people on previous occasions by mirroring their movements. In one instance, she bonded with a man who wasn’t looking at her by sitting next to him and moving her feet in a similar pattern.

“We were basically doing a seated dance next to each other,” she said. “He was smiling and he was sitting and he was looking around the room.”

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

A year ago, Perella used the approach with a woman living with posterior cortical atrophy in a care home in Surrey, England. Mostly bedridden, she had bitten and scratched. Her speech was very limited, and other than screaming, she only spoke a few words.

As Perella sat down with her, she noticed the woman’s tendency to repeat a series of small claps. Then Perella joined her. When the woman clapped, Perella clapped the same. When the woman used the words “Yes, that’s right,” Perella responded in kind, reflecting her tone and inflection.

After a few minutes of communication, the woman physically relaxed and her eyes lit up. Perella reversed the line: “Is it?” The woman replied with an expression of happy surprise. “Yes,” she said, “it is.”

For the woman, personal care and hygiene were particularly difficult. Unlike those activities where the caregiver attended and left, the exchange using adaptive interaction engaged the woman directly.

“It was not done to him. It wasn’t around her or in spite of her,” Perella said. “It was with her and led by her.”

Perella thinks it’s important that people using adaptive interaction want to genuinely connect and communicate with the person with dementia. Merely imitating the person without this intention can give the impression of mocking or infantilizing them.

Perella views adaptive interaction as a source of empowerment and validation.

“It’s just reaching out to the person and committing them to that interaction,” she said. “It honors their remaining abilities, which I think we need to do.”

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

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