I got a call from my neighbor Marion.
“I need to talk to you. My friend Jean was just diagnosed with Alzheimer’s. I want to visit her, but I don’t know what to say to her. What do you say to someone with Alzheimer’s?”
The stigma of Alzheimer’s disease (AD) is so strong, it can lead us to imagine that, once diagnosed, a person changes almost overnight. We can’t help wondering, what will she be like now?
I told Marion, “Jean will still be Jean. If you just keep that in mind, you’ll be treating her in ways that show that you still value her friendship as you always did. That’s what she needs most right now.”
“But,” Marion asked, “should I say, ‘I hear you have Alzheimer’s?’”
“I’d give her a chance to bring it up first. If she doesn’t, try saying, ‘I heard about your diagnosis. I just want you to know, if you want to talk about it, I’m glad to listen. If not, that’s OK too.’”
One man, himself recently diagnosed, said, ”People are not sure how to respond when the topic comes up. Most of them change the subject or attribute my symptoms to aging and say, ‘I forget things too.’”
Such discomfort is very common and understandable. But tragically, it leads to the person diagnosed being ignored. And it dismisses their very real and frightening trouble remembering.
Family members and friends need to know that people diagnosed with AD or any other dementia are sensitive. Their feelings can be hurt, and they are often lonely. Jean needs her friends to be with her, to show her she is still important to them.
How we engage people with dementia reveals–often unwittingly—a lot about what we think of them. Are we distracted, because we don’t think they have anything interesting to say, and we’re essentially pretending to listen? Or do we listen actively, letting them know we want to understand, because what they say is important to us?
As the disease progresses, people living with dementia need the patience and good listening skills of others because AD may make it increasingly hard for them to communicate.
But the people around them face dilemmas they have no preparation for. Many of their natural ways of responding and interacting get them into trouble.
Here are some tips to help you avoid unintended outcomes:
Don’t say, “Do you remember…?” They may not be able to. If you want to reminisce about a time you were together, say, “I remember when we went fishing in Maine, and you were the only one who caught a fish!” In that way you may spark a memory without putting them on the spot.
Make eye contact and listen with all you have. As one woman with AD told her caregivers, “Listen with the ears of your heart.”
Don’t interrupt, because if you do, the person may not be able to pick up the thread of their thoughts again.
Don’t exclude the person when you’re having conversations with others. This can happen even though you’re not aware of it. Be proactive about inclusion!
Be patient. Dementia can make it hard for people to find the right word. You can supply the word if you know it, and they don’t take offense. You might say, “Shall I guess?” One woman was so comfortable with her friends that when she was stuck for a word, she could say, “What’s that big water thing?” And someone would guess, “The ocean?” People living with AD sometimes invent new words for common objects or rely on gestures instead of speech. They may take longer to pull their thoughts together. Give them time and quiet; don’t distract them.
Don’t argue. There’s a maxim in the Alzheimer’s community, “If you argue with someone with Alzheimer’s, you get what you deserve.” That is, a major meltdown. But more important, by arguing you are eroding their sense of security and their self-esteem—both of which are fragile in view of their many losses. Don’t criticize or correct them, even when you’re obviously right. Just let it go.
Don’t condescend to them by using elderspeak—“Come dearie, let’s get dressed”—or baby-talk. They will rightly be offended.
Don’t ask open-ended questions. “What would you like for dinner?” is unanswerable for someone who can no longer remember which foods one eats at dinner or what they’re called. You can ask instead, “Would you like chicken or spaghetti for dinner?” You’re still giving them a choice, but it’s a choice they can make. When even two choices become too much, say, “I know you love chicken. Shall we have chicken for dinner?”
Be honest if you don’t understand. Say, “I’m having trouble understanding. Can you help me?” That tells the person you care about what they are trying to say and want to work with them.
Following these guidelines will help create a safe and supportive environment where the person with dementia is valued, enabled and included. In such surroundings, they may surprise you with their ability to understand and communicate.
Alan Dienstag, PhD, is a psychologist who has worked with people with AD in support groups. He continued to work with one woman long after her language was too impaired to be in a group. But eventually it became harder to connect with her and she seemed to have lost all language. Their last visit was just before he was set to go on vacation to the beach.
He knew she loved the seaside too, so he said to her, “Ann, I’m going to the beach. I’m going to be away for a while.” Her face lit up.
“What do you love about the beach?” he asked.
She was quiet for a long time, and he lost hope that she could answer.
But then she turned to him and said, “There’s a certain kind of music there.”
Maggie Sullivan has come to know Alzheimer’s intimately. She was caregiver and advocate during the eight years her mother lived with the disease. For the past 30 years, she has facilitated caregiver support groups for the Alzheimer’s Association, learning from the experience of more than 300 members of those groups. The opinions she expresses here are her own. Maggie is also a writer whose essays and articles have appeared in the New York Times and elsewhere.
