The New York Times asked Dr Forester and other experts about what to keep in mind when spending time with someone who has the disease.
Be mindful of the setting and your body language
“As people lose the ability to communicate, they still read us very, very well,” said Allison Lindauer, an associate professor of neurology with the Oregon Health and Science University School of Medicine. So strive for a calm, friendly demeanour, she said. Recognise that your body language — your posture, for example, or whether you are clenching your hands or fidgeting — communicates something.
Because your gestures and facial expression can be so important, try to have conversations face-to-face when possible rather than, say, shouting from the other room, said Lauren Massimo, an assistant professor at Penn Nursing.
“The environment where the conversation is being had is incredibly important,” Dr Massimo said.
Limit distractions and background noise, she said, and hold the conversation in an appropriate setting when possible. For instance, if you are discussing what to eat, do so in the kitchen, so if the person with Alzheimer’s has trouble understanding words, you can show him or her what the options are.
Limit open-ended questions and avoid ‘elderspeak’
Instead of a general question like “What do you want for dinner?” ask, “Would you like pork chops or lasagna?” Dr Lindauer said, adding, “You don’t want to put them on the spot.”
Speaking loudly, in a high-pitched, simple baby talk that is sometimes called “elderspeak” or using terms of endearment like “honey” with a person you do not know well can seem condescending, Dr Lindauer said. Research shows that this approach also tends to make people more resistant to care.
“It’s all about recognising that people with dementia are adults,” Dr Lindauer said. “They’re dignified human beings. They’ve had a whole life before this. They deserve our respect.”
Don’t give long explanations
Dr Lindauer offered the common example of a daughter talking to her mother, who has forgotten that her spouse died. Often, the daughter will want to provide an explanation: “Oh, don’t you remember? Dad died five years ago. We were all at the funeral.” But to the person with dementia, that is new information that can feel extraordinarily distressing, Dr Lindauer said.
“I give families the license to listen with respect, comfort and redirect,” she said. So in the aforementioned scenario, the daughter might say something like “Oh, I’m not sure where he is right now, but I’m sure he is thinking about you” or “I’m not sure where he is right now; let’s check in later,” she said.
And don’t get drawn into an argument, Dr Lindauer said: “Nobody’s going to win.”
Change your approach as the disease progresses
Knowing what stage of the disease your family member is in can help you hone your approach, Dr Lindauer said.
The Alzheimer’s Association offers a comprehensive list of communication strategies broken down by stages. For instance, in the early stage, it is important to avoid making assumptions about a person’s ability to communicate based on the diagnosis, the group says. Do not exclude the person from conversations, and give him or her time to respond without interruption. By contrast, in the middle and late stages of Alzheimer’s, you might rely more heavily on nonverbal cues.
Connect with resources
Every expert interviewed for this article noted that improving communication skills could have a tremendous impact on both the person with the disease and the caregivers and that there were free resources available to help. Families can also benefit from connecting with specialised assistance, such as a speech and language pathologist who specialises in memory, Dr Lindauer said.
“Caregivers are completely overwhelmed most of the time,” Dr Forester said, adding that it was essential for loved ones to seek education and support.
Written by: Catherine Pearson
©2023 THE NEW YORK TIMES
