When someone with dementia is having a hallucination, it isn’t imaginary to them. They are not pretending. To them it is 100 percent real, even though everyone else around them knows it isn’t happening.
Dementia hallucinations are something a lot of people with dementia experience. Let’s break down what they are, why they happen, how to help, and some experiences that can look like hallucinations but aren’t.
What Are Dementia Hallucinations?
Hallucinations are sensory experiences that feel like real life to the person having them, but aren’t actually happening in real life.
Types of Hallucinations in Dementia
Hallucinations can affect any of the senses.
- Visual hallucinations: seeing something that isn’t there. In dementia, these are most commonly animals or people. Maybe even bugs.
- Auditory hallucinations: hearing something when nothing is actually there. They’re hearing it in their brain, but the sound isn’t happening in real life.
- Tactile hallucinations: feeling something that isn’t there. One of the more common ones in dementia is the sensation of bugs crawling on their skin or underneath it.
- Olfactory hallucinations: smelling something that isn’t there. The most common one is the smell of burning or smoke.
- Gustatory hallucinations: tasting something that isn’t present. Probably the most common is a metal or metallic taste.
Tactile hallucinations can be a dangerous one. A lot of times they lead to scratching and itching, which leads to bleeding, which breaks open the skin, which can lead to infection.
What Are the Most Common Hallucinations in Dementia?
By far, visual hallucinations. Your loved one sees something that isn’t there, usually an animal, an object, an insect or a person.
Visual hallucinations are really prominent in Lewy body dementia. But they can happen in any type of dementia.
Why Do Hallucinations Happen in Dementia?
For starters, the changes happening in the brain can simply prompt these hallucinations.
But it’s really important to recognize that other things can cause hallucinations too, in people with dementia and in people without it. An illness. An infection of some sort. A medication side effect.
It’s easy to assume that everything your loved one experiences is a result of the dementia. That’s not always the case. They could be having a negative reaction to a medication, or there could be an underlying infection that, if treated, might make the hallucinations go away.
That’s why you should always alert your loved one’s medical provider if they start having these experiences, especially if they’re new or getting worse. And the same goes for you, if you start having them.
How to Respond to Hallucinations in Dementia
1. Ask Yourself: Are They Bothered by It?
You might be surprised to learn that some people who have hallucinations aren’t bothered by them at all. If that’s the case, you don’t really need to do much.
In fact, some people with dementia might actually enjoy the company of the person they’re talking to who isn’t there.
If your loved one is seeing family members who have died, I wrote about that in can people with dementia really see the dead?
Most of the time, though, the person with dementia is going to be in some distress or frustration about what they’re experiencing. So what do you do then?
2. Stay Calm and Acknowledge Their Feelings
Stay calm and reassuring, as hard as that can be. Approach them calmly and use a reassuring tone of voice.
Don’t argue or try to convince them it isn’t real. Remember, it is 100 percent real for them.
Instead, acknowledge the feelings they’re having:
- “It looks like you’re scared.”
- “It looks like you’re upset.”
- “You sound angry.”
When you acknowledge what they’re feeling and acknowledge their experience, it opens the door to a conversation. You can gather more information about what’s actually happening, and that will spark ideas for how to respond to your loved one specifically.
One of my favorite stories with visual hallucinations comes from a very dear friend of mine. Her father had Lewy body dementia, and he would see men in the backyard, back by the trees. He’d get upset about it.
My friend is single. And knowing her father’s personality, and her own, she would sit there with him and ask, “Are any of them single tonight? I’m looking for a boyfriend.”
Then they would start chatting and have some fun with it. All of a sudden, it lightened the mood and the whole situation.
3. Ask What They’re Seeing: It Might Be an Illusion
Other times, asking about what they’re seeing or feeling, and acknowledging it, can show you it might not be a hallucination at all. It could be something that looks and sounds like a hallucination, but isn’t.
It could be an illusion. An illusion is when something really is in the environment, and the person is misperceiving it.
I once worked with a gentleman whose family thought he was having a hallucination of a person in their bed. At that point I did home visits, so we went into the bedroom and talked about what he saw.
What we realized was that the bed wasn’t made. The sheets underneath were crumpled up over the comforter, and it made a bump. He was talking about somebody sleeping under there.
So we wondered if this wasn’t really a hallucination at all. Maybe he was interpreting that bump in the bed as somebody sleeping.
A family member started making the bed in the morning, and it was no longer an issue for him. He no longer thought somebody was sleeping in the bed.
That’s a perfect example of an illusion, not a hallucination. And we would never have gathered that information if we hadn’t paid attention to what he was saying and wanted to know more about his experience.
For more on how dementia changes what your loved one sees, read how dementia changes vision.
4. Change the Environment When They Misread It
Sometimes a person with dementia just isn’t seeing the environment accurately, or understanding it accurately.
You may have heard about people with dementia who see their reflection in a mirror and don’t realize it’s them. They don’t recognize themselves. They might think it’s a stranger, and they can become upset.
If that’s the case, you can modify the environment by removing the mirrors or covering them up to help relieve the distress. I explain why this happens in why do mirrors confuse people with dementia?
5. For Bugs on the Skin, Rule Out Medication First
With tactile hallucinations, where your loved one feels bugs on their skin or underneath it and it leads to lots of scratching, always, always rule out a medication side effect. Make sure you’ve talked to their doctor.
Another thing you can do is take a look at their skin. Show interest:
“Okay, show me where it is. Oh, it’s right here. Let’s look at it.”
You can even put some lotion on their skin to show that you’re addressing it.
There are other strategies you can talk to their doctor about, too:
- Keeping their nails short and filed, so when they do scratch, it does minimal damage
- Putting gloves on their hands
- Keeping their hands busy with other things
6. Redirect to Something Pleasant
And then, as always, classic redirection.
Always acknowledge and hear what they’re saying before you try to redirect. But at some point, you absolutely can redirect them to something you think they’d find interesting or pleasant. Maybe it’s a snack, a favorite drink, an activity, a TV show. You name it.
Sometimes simply moving to a different room, into a different environment, can help the hallucination go away.
And as I mentioned, make sure you’ve alerted their doctor if they’re experiencing hallucinations, especially if they’re new or getting worse.
Remember: Hallucinations Are Real to Your Loved One
Your loved one’s hallucinations are very much real to them. They are not making it up.
The brain is a very remarkable, interesting thing. It can create images and experiences that aren’t actually there.
Working out what your loved one is seeing, and what helps, is a lot to figure out on your own. Inside the Care Collective, we come together every single week to figure out challenging situations like this one, and you have a private platform, open 24/7, where you can connect with other Careblazers. You can learn more here.
