What Lewy Body Dementia Really Looks Like

“There is a man in the corner.”

You look. There is no man. There is a coat rack and forty years of trust riding on what you say next.

Welcome to Lewy body dementia, where “nobody is there” is the fastest way to lose the whole afternoon.

October is Lewy Body Dementia Awareness Month, and I have spent all week on my channels talking about this type, because it plays by its own rules. If you missed the videos, here is everything in one place.

The brain runs its own movie projector

Think of Lewy body dementia like this: the brain runs its own movie projector. It projects people, children, animals, whole scenes right into the living room. Your person is not imagining things the way you and I daydream. Their brain is showing it to them in high definition. Their reality is real to them.

Lewy body also tends to bring:

• Good days and bad days that flip like a light switch. Sharp at breakfast, lost by lunch, back again at dinner.
• Movement changes. Stiffness, shuffling steps, balance you cannot trust. It is a close cousin of Parkinson’s.
• Acting out dreams. Punching, kicking, sitting bolt upright at 2 am mid battle. This is called REM sleep disorder, and more on it below.
• Memory that stays sharper than you would expect, especially early on.

That last one matters more than most people realize. Keep reading.

Why your best tricks can backfire with Lewy body dementia

Here is what nobody tells caregivers: the technique has to match the type of dementia.

With Alzheimer’s, the save button is broken. New information never gets stored. So a kindlet, one of those small kind untruths like “we will head home after dinner,” lands softly and fades away.

With Lewy body, the save button still works on plenty of days. Your person may remember exactly what you promised an hour ago. The fib gets caught, trust takes the hit, and now you are the villain. If that has happened to you, you were not doing anything wrong. You were using the right tool on the wrong type.

When they see someone who is not there

You cannot talk someone out of a hallucination. The projector does not take requests. Try my four steps instead:

1. Repeat it back as a question. “You see a man in the corner?” That one question tells them you believe them.
2. Probe with yes or no questions. “Is he bothering you?” “Do you want him to leave?” Short questions, easy answers.
3. Fix the problem in their world. Walk over, open the front door, and tell the man it is time to go. Lock it behind him.
4. Redirect to a new sense. Hand them something warm to drink, put on their music, give them something to hold. A new sense gives the projector something else to do.

And if the visitor is friendly? A little girl playing quietly in the corner who bothers nobody? You get to leave her be. Not every hallucination is a problem to fix.

Dial up internet in a wifi world

Lewy body slows processing way down. Your person is running dial up internet in a wifi world. The page loads. It just loads slowly.

So try one instruction at a time. Not “get dressed.” Instead: “Push your arm through this sleeve.” Pause. “Now the other one.” Pause. One step, then the next, with time to load in between.

Same with activities. They may refuse the whole game of Yahtzee but happily shake the cup and roll the dice while you keep score. Shrink the task until it fits. Meet them where they are.

And with balance, stay close. A gait belt has saved my back and my people more times than I can count.

When Lewy body dementia dreams get physical

With Lewy body, the switch that keeps our bodies still during dreams stops working. This is called REM sleep disorder, and it is very common with Lewy body. So your person punches, kicks, and acts out the chase scene at 2 am. They are not doing it on purpose, and they will not remember it.

It may help to lower the bed, pad the floor beside it, and move sharp furniture out of swinging range. Some couples sleep safer in separate beds, and there is no shame in that. Tell the doctor what you are seeing, because this one is very treatable.

The warning worth taping to the fridge

Lewy body brains are extremely sensitive to certain antipsychotic medications. The ones to watch for are Seroquel (quetiapine), Zyprexa (olanzapine), and Risperdal (risperidone). In Lewy body they can make everything dramatically worse. If a doctor reaches for one, ask questions, and ask about Depakote or sativa cannabis instead. Never change any medication on your own.

At my memory care homes we used sativa cannabis with many of our people living with Lewy body. It significantly decreased hallucinations and delusions, and it helped them sleep. It worked most of the time. It does not work for everyone. If you want to learn more, my training Benefits of Cannabis Use in Dementia Care walks you through it, and the cannabis trained nurses at leaf411.org run a hotline where you can ask your questions.

One more thing: if your person changes suddenly, almost overnight, think pain and think UTI before you blame the dementia. UTIs are notorious little troublemakers.

You are doing better than you think

Caring for someone with Lewy body means learning rules most dementia advice never mentions, and you are in here learning them. That is not luck. That is love with a work ethic.

Spend Lewy Body Dementia Awareness Month with me

I am teaching on Lewy body all October, and I made two tools to go with it.

The first one is free: my guide What to Say When They See Things That Aren’t There. It gives you my exact scripts for hallucinations and delusions, word for word, so you are never stuck wondering what to say. Grab the free guide here.

The second is my Lewy Body Dementia Everyday Care Companion, and it is $9. It is everything you need to know about Lewy body in one place: what it is, what to expect, the everyday care techniques, plus pages to write down what you are noticing, so you can track changes and walk into the doctor’s office with real notes instead of a blur. Get the Companion here.

Remember, this is hard, but we can do hard things. And you do not have to figure all of this out on your own.

💜 Joanna