When John Ellsworth was diagnosed with Alzheimer’s disease in 2013, he could already recognize his words just weren’t coming out right. The former marketing and design professional and avid gardener struggled to identify flowers and plants, and later the names of close friends. But it wasn’t until his wife, Karlene, had to begin finishing his sentences that John felt the gravity of the disease take hold.
The couple, who live in, Gwynedd, Pennsylvania, were aware that John’s ability to communicate would become a challenge as his brain changed.
“It goes with the nature of the disease,” explains Ruth Drew, director of family and information services for the Alzheimer’s Association in Chicago. “Alzheimer’s is a disease that attacks the brain, and it starts with very minor changes over time. Those changes become more and more profound, impacting various aspects of communication, especially language.”
A person’s ability to say what he or she wants — and decode what others are saying — becomes increasingly difficult as Alzheimer’s progresses. That’s challenging for caregivers like Karlene, 68, who doesn’t struggle to find the right words herself but must now find a way to adjust and accommodate John, 75. “The good news is there are good ways to communicate throughout the course of the disease,” Drew says. Consider, for example, these strategies:
Understand the disease. As Alzheimer’s progresses, difficulties with speech and memory can become more pronounced, according to the Alzheimer’s Association. Someone with the disease might repeatedly rely on familiar words, begin inventing new words to describe familiar objects and easily lose his or her train of thought. He or she might revert back to a native language — say, Spanish despite speaking English the past few decades. People with Alzheimer’s will also likely have difficulty organizing words logically and, ultimately, will speak less often.
In the early stages of dementia and Alzheimer’s disease, Drew says communication doesn’t necessarily suffer in a significant way. At most, someone might repeat stories or not be able to find the “right” words. John, for example, says Karlene has worked tirelessly to adjust the way the couple communicates with each other. “It’s important for both of us to be comfortable with letting the other person talk and not getting angry because things aren’t going fast enough,” he says.
Learn how to get — and keep — attention. Start by limiting the number of distractions nearby — turn off the TV or radio, or go into a quiet room and close the door, suggests Dr. Robert Santulli, an honorary associate professor of psychiatry at the Geisel School of Medicine at Dartmouth in Hanover, New Hampshire. Throughout the conversation, maintain eye contact. If the person with Alzheimer’s is sitting, sit nearby rather than looming above and speaking down to him or her. Touch can help, too. Try holding the person’s hand, placing your hand on his or her shoulder or gesturing by pointing to whatever you’re describing.
Prepare to repeat yourself. Someone with Alzheimer’s likely won’t recall certain details for more than a few moments at a time. Keep in mind this isn’t intentional or meant to frustrate you, and your friend or family member with Alzheimer’s is likely unaware of his or her behavior.
Identify yourself. A loved one with Alzheimer’s may not need direct family members or caregivers to identify themselves until the later stages of the disease, but that’s not necessarily the case for extended family or friends. In “The Alzheimer’s Family: Helping Caregivers Cope,” Santulli recommends using language such as: “I’m your nephew Carl … Your brother Fred’s son,” or another identifier. Even though a person with dementia or Alzheimer’s may not remember who someone is or the nature of the relationship, he or she will find comfort in knowing a member of the family or close friend has come to visit.
Call him or her by name. “All the rules of courtesy apply” when greeting someone with Alzheimer’s, Drew says, which means using his or her name — which creates a sense of individuality. “If they prefer, say, Mary — say Mary. If they say Mrs. Jones, say Mrs. Jones,” she adds. Addressing someone directly helps retain attention, too.
Speak in slow, short sentences, not paragraphs. If you’re telling a loved one with Alzheimer’s a story or plan to share multiple ideas, consider how confusing it might sound. Instead, limit your requests or stories to short, direct sentences — with only one idea per sentence. “Keep communications clear and simple,” Santulli says.
Be specific. If you want to show someone with Alzheimer’s where something is, identify objects by name — “here is your hat,” for example, rather than “here it is,” the Alzheimer’s Association suggests. And avoid confusing and vague statements. Rather than saying, “Hop in the shower,” try, “Please come here. Your shower is ready.” The first request could be taken literally — creating an unsafe situation.
Ask direct questions. Santulli suggests opting for closed-ended questions that can either be answered with a “yes” or “no.” In his book, for example, he recommends asking, “Did you enjoy the roast beef and potatoes at dinner?” rather than, “What did you have for dinner?” Otherwise, someone with Alzheimer’s could feel like he or she is being quizzed on memory, leading to unnecessary frustration. Direct questions make it easier to supply concise answers, Santulli says.
Avoid phrases like “Don’t you remember?” Same goes for: “Did you forget? We already talked about that. I just told you. How could you not know that? Try to remember!” This type of wording can make someone with Alzheimer’s feel worse about his or her inability to recall certain people, places or things. It’s not fair to ask someone with Alzheimer’s to remember something, Santulli says. Once it’s forgotten, it’s likely gone for good, and speaking in this way will only elicit feelings of frustration and guilt.
Offer to help. Making slight accommodations can go a long way, Drew says: “Maybe they’re having difficulty finishing sentences or can’t think of the right word for a certain thing but are still very capable overall. It’s important to focus on the person, and ask: ‘Does it help when I fill in the word, or did that frustrate you?” If the answer is that it helps, Drew says, suggest a word you believe the person is trying to think of. Just be careful not to cause unnecessary frustration by being overly suggestive or taking over the conversation. And if you understand what the person is trying to say, you might not need to give the correct word. “It takes a bit of detective work,” Drew says, to determine what works best.
Don’t rely on verbal communication. There are many ways to communicate beyond speaking verbally — think facial expressions, body language and behavior, Drew says. “Just because someone might not be able to speak as eloquently as before, doesn’t mean you can’t look them in the eye, greet them by name and take them by the hand.”
Avoid talking as if he or she isn’t in the room. Your family member or friend with Alzheimer’s disease is still a person, Santulli says: “Don’t talk to someone else in the room about [him or her]. Just because they have Alzheimer’s disease, doesn’t mean they’re not in the room.” People notice when they’re excluded from the conversation — it feels demeaning and can strip away dignity.
Relax your tone. Like anyone facing a lifelong illness, people with Alzheimer’s disease appreciate a calm and supportive attitude from caregivers, friends and family. The Ellsworths often find themselves frustrated — or even angry — when one of them doesn’t understand what the other is trying to communicate, John says. Keep in mind that even when someone loses his or her words, that person can still recognize tone. “If we get frustrated and frantic or seem like we are in turmoil ourselves, we exude that, the other person can feel it and it can be upsetting to him or her,” Drew says. He or she may not know why you’re impatient, but they will certainly detect that you are. “We can help [people with Alzheimer’s] be their best when we are calm, supportive and kind,” Drew says.
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How to Talk to Someone With Alzheimer’s Disease originally appeared on usnews.com
