One of the hardest parts of caring for a loved one who has dementia is watching your shared connection slip through your fingers and feeling there is nothing you can do to stop it. You notice little losses at first—your loved one uses the wrong words or has tangled memories…until one day you hear yourself saying, “Mom, don’t you remember me?”
In the US, one in three seniors dies with some form of dementia. This disease not only destroys a person’s memory but also erodes his/her ability to understand the meanings of words and find the right ones. This can be devastating for the elderly, speeding their mental and emotional demise, and for their families.
Gerontologist Anne Basting, PhD, says there’s a better way. People living with dementia can’t easily access rational language or answer questions that require them to recall facts. We have to learn new ways to communicate with them. Her approach—creative communication—doesn’t mean that you’ll be able to connect with the former version of the person in the way you used to. But it makes people with dementia more relaxed, more stimulated and less lonely. For caregivers, this type of communication can break through the loved one’s silence and withdrawal.
Bottom Line Personal spoke to Dr. Basting, who won a MacArthur Foundation genius grant for her work with seniors, about why her method of creative communication is so effective…
How It Works
Years ago, I volunteered at a nursing home, trying to get residents to talk about their lives and histories. For weeks, all I got from them were blank expressions. In desperation, I tore a photo of the iconic cowboy the Marlboro Man out of an old magazine, held it up and asked the group, “What do you want to name him?” One of the residents whispered, “Fred.” I was stunned. “Fred who?” I asked. “Fred Astaire,” added a woman. For the next 45 minutes, I witnessed a remarkable transformation as these seniors started laughing and singing while they imagined a story about this cowboy from Oklahoma with his trusty dog, which they named ABCDEFG.
Our identity depends largely on maintaining a narrative about who we are, where we come from and the others in our lives. When you ask people with memory loss to recall things, you’re forcing them to go to the place of their loss to express themselves, and that creates a wall of insecurity that they try to hide behind.
Instead of being hyper-focused on what’s been lost, look for what strengths remain. This engagement doesn’t revolve around memory or the continuity of identity but rather fun and imagination. To do that, I emphasize storytelling, music and other arts to meet people where they are in their dementia. When memory fades, what survives is imagination, a creative force so powerful that it can break isolation, reconfigure relationships and bring joy. Example: I worked with a man who couldn’t remember the word for water. I asked him, “Can you show me how water moves?” He got up and danced for a half-hour.
Strategies I use to communicate with people who have dementia….
Instead of saying “No,” say “Yes…and….” Our instinct as caregivers is to try to heal loved ones. If you just keep reminding them, correcting them, nagging them enough, their memory and focus may get better, but this type of vigilant fixing often shortchanges the meaning and connection that can happen in that moment. Example: You go out to dinner with your wife and a few couples. As soon as you get home, she starts setting the table for dinner. You say, “Sweetheart, we were just at a restaurant having dinner.” Better: Reduce the amount of correcting you do over memory loss, and replace it with curiosity. Say to your wife, “Are you setting the table because you are hungry? Is there someone you are missing that you would like to invite to dinner?”
Important: You do need to say “no” if an elderly person is doing something unsafe, but a stern lecture is not likely to be instructive for the future.
Better: Gently correct the person, and then transition to a positive creative moment to maintain calmness and connection. Say, “We have to stay buckled in our seats because we aren’t there yet. We’ll be there soon. How about we play a game? Let’s say the name of the place we are going in 10 different ways.”
Ask “beautiful questions.” Many of us try to stimulate and converse with loved ones with dementia by asking questions that have simple right and wrong answers. Example: “Do you remember what we spoke about last time I was here, Dad?” But if someone can’t access practical information, fact-based questions are daunting. Answering them incorrectly only offers evidence that their condition is worsening.
Better: Ask open-ended questions with no specific answers to engage the senses and include a playful component. Example: You and your mother are looking out the window at a big pine tree. You ask her, “What do you think that tree is thinking while it is looking at us?” Or, “If you could name that tree, what would you name it?” Beautiful questions can allow people with dementia to exercise their remaining strengths without judgment.
Another way to use beautiful questions: Use them to elicit information about physical or emotional pain your loved one might be experiencing. Many people with dementia are reluctant to complain about discomfort. Example: You notice your dad is limping. When you ask him if there’s something wrong with his foot, he says, “It’s fine.” Instead, ask, “Dad, if your foot could talk right now, what would it say?”…or, “If your foot was a color, what color would it be and why?”
Helpful resource: For a list of more beautiful questions, go to TimeSlips.org (free sign-up is required).
Offer proof of listening. It’s easy to invalidate loved ones when they talk, especially if they have trouble articulating their thoughts or stumble over their words. Better: Try to make them feel deeply heard, so they know they are not invisible and their words and presence still matter. Ways to do that…
Repeat their exact words back to them. Resist the urge to interpret what they are saying or fill in sentences for them. Match their pitch and facial expression. Example: Your mother says, “They gave us chopped lamb for dinner.” You know she means “lamb chops,” but smile and reply, “Chopped lamb for dinner. You love that. Tell me more about it.”
Repeat what they say even if it makes no sense. Rather than ignore jumbled words, try to meet your loved ones at whatever level they are at. Example: I used to hold weekly creative storytelling sessions with dementia patients. There was an elderly woman named Dorothy who could respond to my questions with only the sound “Ba-ba-ba-ba-ba.” Each time, I made sure to hold her hand and repeat the sound back to her—“Ba-ba-ba-ba-ba. Did I get that right, Dorothy?” One day, I asked the group what they wanted to name a character in a story we were composing. Dorothy said, “Ba-ba-ba-ba-ba Dorothy!” All this woman had was her sound—but once she felt convinced that the sound was being heard, she had the confidence to be more expressive and tap into humor.
Echo their gestures and movements even if the person can’t speak. Example: I used an image of a young Inuit boy with a sled dog and a whip. I asked the group what they saw, and one woman tried to come up with the word—but finally made the motion and sound of a whip…and we repeated it with her to affirm her response as part of the story.
Embrace silence. The world moves incredibly fast for people with dementia. By the time they understand what has been said, the conversation has moved on. That makes it safer for them to not participate because the process can be so exhausting. They also don’t want to risk making others impatient with them. Better: Slow down your conversations, and hold open moments for the person’s responses to honor the pace at which his/her communication now works.