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Many patients with advanced dementia can no longer speak or comprehend language. Researchers are finding that nonverbal dementia patients often receive substandard care because their caregivers don’t know how to communicate with them.
A nonverbal patient, for example, might refuse meals because they don’t recognize a food’s texture. Or a patient might become combative during bath time because they don’t understand what is happening. Over time, skipping meals leads to malnutrition, and cutting bath time short leads to poor hygiene.
In recent years, researchers have increasingly focused on how to communicate with a person who has dementia. Their findings can be helpful to someone who works with dementia patients in a clinical setting or someone who cares for a loved one at home.
More than 50 million people worldwide live with dementia, a progressive neurological disease. There are more than 100 types of dementia, and the most common ones, such as Alzheimer’s Disease, impact memory and body function.
In the early stages of the disease, a person with dementia may forget words. As the disease progresses, they can lose their ability to build complex sentences. They can also struggle with remembering what was said.
People with advancing dementia will no longer understand figures of speech like metaphors or idioms. Phrases like “It’s raining cats or dogs” or “I was rolling on the floor laughing” can be confusing. Nonverbal communication also loses meaning, and a person may no longer understand a shoulder shrug or thumbs up.
In a focus group of 22 caregivers, all of the participants with family members who had severe dementia said that daily communication was a great challenge. Eighty percent of caregivers with loved ones with mild to moderate dementia said the same.
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Although caregivers say communication is a great struggle, researchers have long ignored the subject. One literature review from 2017, for example, focused on communication for nurses with dementia patients. The research team only found six articles that fit their search criteria.
The body of research is growing, and a 2021 literature review in the International Journal of Nursing Studies found 31 qualifying articles. Researchers are beginning to understand more about how dementia impacts communication and how caregivers can give their messages meaning.
Caregivers of dementia patients are first advised not to use “elderspeak.” People using “elderspeak” typically have high-pitch, sing-song tones as if talking to a small child. Terms of endearment like “hon” or “sweetie” are often used.
Elderspeak can lower the patient’s self-esteem, especially if they can sense they are being infantilized. It can also make them more resistant to the caregiver or the task at hand, such as getting dressed or bathing.
Rather than using elderspeak, researchers recommend speaking in a confident, friendly tone that is mindful of pacing. The caregiver should ask simple, yes-or-no questions. They should paraphrase when needed. Repeating phrases like, “We’re going to put on your coat,” can reassure the patient.
When possible, caregivers should stand so they are not looking down on the patient. Standing above the patient can feel like a form of downward communication, which gives the sense the caregiver is in charge and talking down to the patient. Some patients might resist in response.
Patients with mild to moderate dementia may still be able to have a discussion or follow multi-step directions. They may still be able to make choices when presented with several options. Caregivers are advised to be comfortable with the silence that comes between a question and an answer.
Patients with varying levels of dementia will benefit if their environment is free of distractions. Caregivers should turn off televisions or radios, shut hallway doors and limit the amount of information the patient is trying to process.
Patients who are still verbal may need time to process what was said before they respond. Listening and responding may be difficult, and such a challenge can lead to frustration.
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Dementia patients who can no longer communicate may sometimes seem agitated and angry. Screaming, resisting a bath or pushing away a dinner plate is part of what researchers call behavioral communication.
Behavioral communication might seem like crude conduct at times, but researchers urge caregivers to focus on the underlying message. If a dementia patient, for example, is in physical therapy and suddenly removes her shirt, the caregiver should understand that she is overheated. She isn’t able to articulate that she is too hot, so she removes the source of her discomfort.
Caregivers can also feel frustrated by the patient’s inability to communicate. Being yelled at while trying to secure a patient’s shirt buttons can make a person want to walk away from the task. Researchers have expressed concern that there is a lack of understanding of behavioral communication. Patients who rely on behavioral communication are at greater risk for substandard care, which has some scholars calling for greater research and awareness.
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