Communication With a Loved One Who Is Living With Alzheimer’s Disease
June Is Alzheimer’s & Brain Awareness Month. This is a time that we focus on the 50 million people who are living with Alzheimer’s disease—and also on the many millions of family members and friends who are supporting their well-being.
Family caregiving is hard work, especially when a loved one is living with memory loss. There is hands-on care, piles of paperwork and watchful responsibilities. Yet many family members report that of these tasks, the most challenging is communicating with their loved one.
From the early stages of the disease, people living with Alzheimer’s may have trouble finding the right word, or understanding what words mean. Short-term memory may be more severely affected than long-term memory. Your loved one might, for example, be able to converse about things that happened years ago, yet be unable to recall things that happened or were said moments earlier. They might forget where they are or even who they are with.
Emotions, which often play a big part in communicating, may produce unpredictable or inappropriate responses. Communication difficulty can cause frustration and outbursts, or withdrawal.
Dementia care experts share 10 practical tips for better communication with your loved one:
Think about the environment. Choose a quiet setting for your conversation. Turn off the radio and TV. People with dementia have trouble sorting out speech from background noise, or focusing on the speaker if there is distraction.
Begin each visit or conversation by calling your loved one by name. Sit at their level, at a distance that seems comfortable, moving slowly to avoid startling them. Make eye contact and be sure you have your loved one’s attention before you attempt to touch or embrace them.
Speak slowly, clearly, and at a volume appropriate for your loved one’s hearing ability. Avoid shouting and overstimulation. Keep your messages short enough to fit your loved one’s attention span. Use short, simple sentences—but not baby talk.
Give your loved one time to organize a thought and respond. They might do better with open-ended questions that allow a range of appropriate responses—or with prompts requiring a simple “yes” or “no.” Watch your loved one’s reactions to see what works.
Mirror your loved one’s feelings and emotions. If your loved one is upset about something, reassuring them that that everything is fine likely won’t make the situation better. In fact, it may cause more distress. Instead, validate your loved one’s feelings by telling them you understand and would feel the same way if such a thing were happening to you.
If you have to repeat yourself, watch your loved one’s reactions to see if it’s best to say the same words exactly as before (so there is only one message to process) or whether it is more helpful to paraphrase or simplify. Similarly, if your loved one is struggling for a word, is it helpful or frustrating to have you supply it?
Sometimes it may be appropriate for you to just talk, gauging reactions through visual clues, even if your loved one is unable to organize a response. Just listening to you speak can bring them pleasure.
If your loved one doesn’t know where they are, or even who you are, it is usually best not to focus on correcting their ideas or perceptions. Instead, focus on the associated feelings they are experiencing. For example, if you and your loved one are sitting in the doctor’s office, but your loved one thinks they are at the airport, rather than repeatedly correcting them, you might say, “It’s been a long wait, hasn’t it!”
People with dementia may retain certain communication abilities. For example, someone who is unable to carry on a conversation may nevertheless be able to sing a song. Help your loved one discover and use their unique talents.
If you are facing emotional or behavior obstacles, discuss the situation with your loved one’s care professionals, a counselor or a support group.
Each person with dementia has individual communication needs, which might change from day to day, so flexibility is needed. Share what you’ve learned with other family and friends to encourage them, too, to have better interactions with your loved one.
A different type of truth
Often the best thing you can do is to enter into your loved one’s world, wherever that happens to be. Avoid correcting your loved one or trying to get them to live in the “real” world, which can create frustration and anxiety. For instance, if your loved one says, “My mother will be coming to visit soon,” don’t remind them that their mother passed away years ago. Instead, say, “Tell me more about your mother.”
The old saying “honesty is the best policy” might not hold true if your loved one has dementia. It may be better to tell what dementia care experts call a “fiblet” if the truth would be frustrating or cause stress and anxiety. The classic example is a person with dementia who should no longer drive but keeps asking for the car keys. Rather than reargue the topic day after day, family members might say the car is in the shop being repaired. Talk to a dementia care expert for more suggestions.
Words aren’t the only way to communicate
Conversation is not the only—or even necessarily the best—form of communication. Your loved one may derive enjoyment and a sense of connection just by listening to music, or listening to you read, or looking at books, photo albums or videos. Share household chores like folding laundry or washing dishes.
And in advanced stages of Alzheimer’s, when verbal skills become severely limited, body language becomes a more important tool for communicating emotions and reactions. Watch your loved one’s face, posture and gestures for changes and reactions. Are they happy, sad, calm, agitated? Can you pick up positive or negative reactions to a particular topic or activity?
Your own body language is important, too. Without saying a word, you can project your love and caring, and convey a sense of comfort and security. Here are some suggestions:
- To appear relaxed and at ease, sit in an open posture, with neither arms nor legs crossed.
- To show interest and involvement, lean forward a bit to show that you are listening.
- To avoid showing frustration or agitation, remember your own gestures and facial expressions.
Don’t overlook the power of touch. Reinforcing pleasant emotions with a touch to the hand or a hug can help the person you are visiting or caring for feel calm, happy, and loved. Again, gauge body language for clues as to whether a hug or other form of physical contact is welcome and appropriate at a particular time.
Finally, don’t judge the success or value of your communicating in conventional terms. You can’t expect your loved one to follow the usual patterns of conversation, or even to recall an interaction a few minutes later. But research shows that while a person with dementia might forget a visit or conversation, the positive emotions can linger for some time.
Linguists who have studied the communication style of people with dementia and their caregivers report that these pairs develop their own “language”—their own way of being and communicating that sustains closeness. As you learn your loved one’s new language, they will learn the new way too, and communication will most likely improve. A professional trained in communication disorders can also offer guidance.