What to do when you don't know what to say to someone with dementia
*Resident names and any identifying details have been changed for privacy.
June 26, 2020
It happens frequently. You struggle to come up with an appropriate response to the person with dementia sitting in front of you. You squirm as they wait expectantly for your answer.
Maybe you didn't understand the question because their words didn't make sense.
Maybe their speech was unclear, garbled and unintelligible.
Maybe they are demanding the impossible from a reality that doesn't even exist.
Whatever the case, you're not alone. It happens to everyone.
Keep calm. Take a breath. Step back to gain perspective on what it is that they really need in this moment.
There are a good many situations in which the old standbys will work just fine:
"Tell me more about it."
Another effective response can be to echo a few of the words you did catch, maybe while nodding along slightly.
These non-committal comments tend to work well in situations where the person is just chatting in order to connect socially.
However, be warned: if they are trying to communicate an important or specific message this type of response is risky. Far from helping, it could actually make the person feel dismissed and unimportant. This can hurt their feelings, their trust in you, and your relationship.
Pay attention to tone of voice and facial expression to determine their intent. What do they want and need from this interaction?
Try to understand them if you can, and try also to help them feel understood.
Research confirms that people who feel understood by those around them are happier and have less physical discomfort than those who don't.
Feeling understood is a common need that most humans share. In fact, some psychologists argue that for some people feeling understood is even more important than feeling loved.
There are a number of clues you can use to help figure out what someone is trying to express.
Take a minute to look around and take note of clues such as:
Their tone of voice
Their facial expression
Their body language
Where are (or recently were) they looking?
What are (or recently were) they doing?
What is (or has been) going on in the environment? On the TV?
One of the most important keys to deciphering their words (or behavior) is to imagine what is happening from their point of view.
Try to see the situation through their eyes, with the information their brain currently has available. (While you can't know exactly what information they have available in their current reality you can sometimes get pretty close with an educated guess.
Then smile back! Give a giggle. They often don't need a direct response.
Even if you don't understand their exact words, understand that they are trying to connect with humor. Make eye contact and give them that goofy grin!
They'll feel connected and understood.
If you encounter someone sitting alone with a scowl or a frown, go ahead and smile; it may actually make a big difference in their day!
However, if someone is trying to tell you something that is upsetting to them, you're better off to look like you're taking it seriously. Smiling will send them the message that you don't understand or care about their problem.
A furrowed brow, a thoughtful nod… these types of gestures will communicate the message that you are listening to what they need.
Even if it's not true in "Reality" it might as well be: it's true in their reality. It feels 100% true to them.
If they think someone is at the window, don't dismiss their concern and tell them that there isn't. How do you know (from their point of view)? Get up and go look. Then you can assure them there's no one there… but you'll be sure to keep an eye open.
Imagine that whatever they THINK is happening was ACTUALLY HAPPENING to you… How would you want someone to respond to you?
Imagine that right now, as you read this, you're staying at a hotel where I am working behind the desk.
Suddenly you realize you have lost your wallet! You need to get it back before your money disappears and you have to cancel and replace every card you've been carrying.
You come to tell me about your missing wallet. I give you a big friendly grin and say - in a very soothing voice - "It's okay…. Want some ice cream?"
Are you feeling soothed? Do you want ice cream right now, in response to your missing wallet?
I'm guessing: no.
I'm also guessing that you won't feel like I am taking you seriously or being helpful at all.
So then what? Anxiety will likely grow, along with other uncomfortable feelings.
Anger, distrust, betrayal?
You want to find your wallet, right?
So, what if instead of smiling inanely at you in response to your crisis, I tried to help you find it?
Even if I couldn't actually find it (perhaps because I knew you never brought your wallet to this "hotel" you think you're in, since we've gone through this every day since you moved into my care home), I could still do something to show you I understand your situation and that I care.
Sometimes it can help tremendously to act just a little bit more angry than than they are at whatever's upsetting them. It makes SO much difference to have someone on your side!
Humans get mad when we feel something is unjust or wrong. When someone advocates for you, you don't have to fight so hard for yourself. You can relax a bit.
I had stationed the med cart outside of the dining room doors in the hopes of catching most of the residents as they wandered by to give them their pills. Dimples scurried up to me, gripping her meal ticket tightly. Her brow was furrowed even more deeply than normal.
“Just look at this!” she demanded, shoving the eight by four inch paper into my hand. “This is ridiculous!”
I inspected it closely and was mildly surprised to find absolutely nothing unusual about it. It was simply a ticket with her name and a list of everything she'd received on her tray. It looked exactly the same as it did every day.
I couldn't begin to guess what was bothering Dimples, but it was clear how she felt about it. I shrugged internally and jumped right in.
“This will not do.” I shook my head. “This is completely unacceptable.”
“Well, what are we going to do about this?”
I turned the paper over with a flourish and marked in big bold letters: “THIS IS RIDICULOUS AND UNACCEPTABLE!”
I narrowed my eyes slightly in (what I hope looked like) determination and proclaimed vehemently, “I will take this to them myself and tell them what they can do with it!”
She breathed an audible sigh of relief and smiled in satisfaction. “Thank God. Finally, someone will take care of it! I was afraid I would have to do it all myself!”
Are they holding anything in their hands?
What are they looking at?
What were they doing just prior?
Have you noticed any patterns of getting angry at certain times during the day?
What else is happening in the environment? On the TV?
Are they hungry, painful or otherwise uncomfortable?
"This must be really upsetting you!"
"I can see this is really important."
"This is not okay! I will make sure that we get this addressed!"
"You're one of our most valued residents! [or 'clients', 'members', 'parents'... whatever!]
You don't deserve this treatment! I'm going to get to the bottom of this! You should not have to deal with this!"
Never hurts to stroke the ego a bit! But, more importantly, having someone stand up for you promotes some really powerful feelings of relief, of belonging and of being understood.
Imagine someone is mad at you for something and you don't know what, or it is something that you didn't really do, but in their reality you did… Now what?
Do what you would want someone to do for you if it really happened, right?
If nothing else, this will usually cover it:
"I am sincerely sorry if I have done or said anything to hurt you or make things harder for you. I would never want to do that, and if I have, I am sorry."
It may be hard for people with dementia to identify their feelings (to say nothing of the millions of people without dementia who likewise struggle with this!)
Even if you don't know why the person feels the way they do, if you can recognize and label their emotion you can not only help them feel understood, but you can also lessen the intensity of the negative emotion.
"That sounds really frustrating."
"You're feeling sad?"
"You really miss your husband. Does it feel scary not knowing where he is."
"Are you feeling lonely?"
"It seems like you're feeling angry."
It can be helpful to have the person physically do something to alleviate some of their frustration.
Writing out a letter of complaint or making a phone call to the "manager" can also help the person feel heard and valued.