What are the "Golden Rules of Dementia Communication? I wish I had known the golden rules of dementia caregiving when I was caring for Joe. These lessons could have saved me from so many stressful moments and helped me find more peace and joy on that journey. Sadly, I learned some of these lessons the hard way after many painful encounters.
To refresh what’s happening in the brain of someone with dementia: their cognitive memory is severely damaged, along with their short-term memory. When Joe kept losing his wallet and credit card, I would get frustrated and ask where he lost it, or worse, scold him for losing it again. Asking where he last had it last didn’t help either. All these questions caused him distress, and I felt helpless because there was no way to resolve the situation. I realized that it’s best to avoid these kinds of questions altogether.
Here are my Golden Rules of Dementia Communication:
Don’t ask direct questions.
Listen to the expert—the person with dementia—and learn from them.
Don’t contradict.
Dementia changes everything—how someone thinks, communicates, and interacts with the world around them. I experienced this firsthand with Joe. Supporting a loved one with dementia means learning to approach conversations with compassion, patience, and sometimes creativity. Certain phrases can make things worse, increasing confusion and frustration. Here are seven things I learned the hard way that you should never say to someone with dementia:
1. "You’re wrong about that. That never happened."
When Joe would tell me something that wasn’t true, I used to correct him. I’d tell him he was wrong, and it only led to more confusion and distress. I learned that it’s not about being factually correct—engaging with his reality was far more helpful. By acknowledging his feelings and thoughts, I could keep the conversation calm and supportive, instead of making him feel disoriented.
2. "Don't argue."
I made the mistake of trying to assert control in our conversations, especially when I was exhausted. But arguing never helped. Joe would become more anxious and defensive, and it only escalated things. I realized that it was better to listen, validate his feelings, and keep the conversation light, even if I didn’t agree. This approach kept things peaceful and eased the tension.
3. "Do you remember...?"
I used to ask Joe if he remembered specific events, like a doctor’s appointment or that I had to leave, but it always ended with frustration on both sides. When someone with dementia struggles with memory, asking them to recall something puts a lot of pressure on them, and I could see how it made Joe feel bad. Instead, I put up a kitchen calendar with events of the day and learned to bring up memories in a gentle way—sharing pleasant stories without expecting him to remember them. It made our conversations much more enjoyable.
4. "You know your mom has been gone for over 10 years."
One of the hardest moments for me was when Joe would talk about people who had passed away, like his mother. I’d remind him that his mom had died, thinking it would help him be more present in the moment. But all it did was upset him, sometimes to the point of reliving the grief. I learned to avoid these painful reminders. Instead, I would offer comfort and reassurance, gently steering the conversation elsewhere.
5. "I just told you that!"
Hearing the same questions over and over can be exhausting, and I used to snap at Joe out of frustration, saying things like, “I’ve told you that already!” But each time I did, I saw the hurt in his eyes. He wasn’t repeating himself to annoy me—he simply couldn’t remember. I learned to calmly repeat myself without showing frustration. Patience truly became my best friend during those moments.
6. "What did you do this morning?"
Asking Joe to recall recent events only caused more stress. His short-term memory was fragile, and asking about specifics just overwhelmed him. Instead, I’d focus on more general or pleasant topics—like our favorite trips or funny moments from long ago. It lightened the mood and often brought a smile to his face without putting any pressure on him to remember.
7. "Don’t you recognize me?"
There were days when Joe didn’t recognize me. I used to ask, “Don’t you know who I am?” hoping it would jog his memory, but it only made him anxious. I learned that instead of asking, it was better to gently reintroduce myself with phrases like, “It’s me, Barbara, your wife.” I had to remind myself that in his mind, he might be seeing me as a different person—maybe younger or from a different time in our lives. It hurt, but I had to meet him where he was, not where I wanted him to be.
Conclusion
If there’s one thing I’ve learned from my time as a caregiver, it’s that communicating with someone who has dementia requires a lot of patience, empathy, and understanding. By avoiding certain phrases and being mindful of how you speak, you can create a more supportive and comforting environment. The goal isn’t to be right—it’s to help your loved one feel safe, loved, and understood as they navigate the challenges of dementia.
So, remember the Golden Rules of Dementia Communication
Don’t ask direct questions.
Listen to the expert—the person with dementia—and learn from them.
Don’t contradict.
You’ll be surprised how much easier things get when you approach conversations with kindness and care.
Action Item:
The next time you’re communicating with a loved one who has dementia, try to consciously avoid one of the phrases mentioned above. Instead, focus on validating their feelings or gently redirecting the conversation. Practice patience in these moments and observe how it changes the interaction. You’ll likely find that a calm, empathetic approach eases tension and creates a more positive experience for both of you.
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Barbara Huelat, a dynamic force in healthcare design, author, and speaker, shares her expertise in her latest publication, Taming the Chaos of Dementia. With her profound understanding and passion for the subject, she offers practical wisdom on navigating dementia care with empathy and skill, transforming this complex challenge into an empowering journey. Explore Barbara's insights at barbarahuelat.com or call 703-795-1743 for an enriching experience.
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