Understanding and Managing Hallucinations in Lewy Body Dementia

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“I remember the first time my husband saw children in our living room. They weren’t real, but to him, they were as clear as day.”

It’s not unusual for caregivers whose loved ones have Lewy Body Disease (LBD), to encounter hallucinations. It can be one of the most challenging and heart-wrenching experiences. Up to 80% of people with LBD experience hallucinations, making them a core symptom of the disease according to the National Institute of Health’s National Library of Medicine.

What Are Hallucinations?

Hallucinations in LBD are vivid, detailed experiences where a person sees, hears, or feels things that aren't there. Unlike brief illusions or tricks of light, these experiences are persistent and very real to the person experiencing them. According to the Lewy Body Dementia Association, visual hallucinations are the most common type, with people often seeing:

• Children or small animals in the room

• Deceased family members or friends

• Objects that appear to move or change

• People or figures standing in doorways or corners

While visual hallucinations are most frequent, research from John Hopkins Medicine shows some people experience other types of hallucinations, including:

• Hearing voices or even music

• Feeling phantom touches

These experiences can be scary, but understanding them will help you respond with compassion and support.

Why do Hallucinations Happen?

Hallucinations in LBD happen because of specific changes in the brain. When protein deposits called Lewy bodies build up, they disrupt how the brain processes and interprets information. Think of it like a TV with crossed wires - the signal gets mixed up, creating images or sounds that aren't really there.

Common triggers that might make hallucinations more likely include:

• Poor lighting or shadows

• Fatigue or time of day (often worse in late afternoon or evening)

• Stress or changes in routine

• Certain medications

• Physical illness or discomfort

How to Manage Hallucinations

Supporting someone through hallucinations requires a mix of practical strategies and emotional support.

The first question you should ask yourself is there any danger to your loved one or you? Generally, these hallucinations are not dangerous.

Then you need to assess how disruptive are they? If they occur infrequently and don’t last for very long it may not be an issue.

Start tracking when they occur, for how long and any possible triggers in your Caregiver’s Lifeline tracker (shameless plug, I know). This one step alone can get you closer to a solution that works for both of you.

Here's some things to be aware of and some simple changes that can help.

Environmental Changes:

• Improve lighting, especially in darker areas

• Remove or cover mirrors that might be causing confusion

• Reduce clutter and simplify the environment

• Keep consistent daily routines

Safety First:

• Remove tripping hazards

• Secure dangerous items

• Install night lights

• Consider motion sensors or door alarms if wandering is a concern

If you’ve tried everything and it’s an issue, then you should consult with your physician. Bring along your symptoms tracker so the doctor understands the frequency and duration.

• Work with your doctor to review medications

• Consider treatments that might help reduce hallucinations

• Get regular health check-ups to rule out other causes

The National Institute on Aging recommends that medications like cholinesterase inhibitors may help reduce hallucinations for some people with LBD. But, as always, consult with your physician first.

Supporting Your Loved One

The way you respond to hallucinations can make a big difference in how our loved ones cope. Here are some proven approaches:

1. Stay calm and validate their experience

2. Don't argue about what they're seeing

3. Gently redirect their attention to something else

4. Offer reassurance and comfort

5. Use distractions like music or familiar activities

Remember, hallucinations are very real to your loved one.

One caregiver told me about the children that used to come and visit her husband. He would just quietly sit and talk to them or watch them play. Since it didn’t bother him or interrupt anything, she just played along. When it was time to do something, she’d just tell him they needed to go home and could come back another day.

Frequently Asked Questions

• What stage of LBD do hallucinations happen?

  Hallucinations often appear early in LBD, sometimes even before memory problems. Research in the Journal of Alzheimer's Disease shows that unlike other types of dementia, they can be one of the first symptoms people notice. They might start within the first year of diagnosis.

• What is the difference between hallucinations and delusions?

  Hallucinations are false sensory experiences - seeing, hearing, or feeling things that aren't there. Delusions are false beliefs, like thinking someone is stealing from you or that your spouse is an impostor. According to the Lewy Body Society, both can occur in LBD, but hallucinations are more common early on.

• How do you stop hallucinations?

  While you can't always stop hallucinations completely, Cleveland Clinic specialists recommend:

  • Working with doctors to adjust medications

  • Identifying and avoiding triggers

  • Maintaining good sleep habits

  • Keeping a regular routine

  • Ensuring good lighting

  • Addressing any physical discomfort

• How do you deal with hallucinations?

  Stay calm and:

  • Don't argue or try to convince them it's not real

  • Acknowledge their experience

  • Offer gentle reassurance

  • Use distractions when appropriate

  • Ensure the environment is safe

• How do you comfort someone who's hallucinating?

  • Stay close and maintain a calm presence

  • Use a gentle, reassuring voice

  • Hold their hand if they're comfortable with touch

  • Listen without judgment

  • Validate their feelings

  • Offer simple, calming activities

• How long do hallucinations last?

  The duration varies greatly. Research published in Nature indicates some hallucinations might last just a few minutes, while others could persist for hours. They often come and go throughout the day and may be more frequent during certain times, like evening hours.

Living with LBD hallucinations isn't easy, but with understanding, patience, and the right support strategies, you can help your loved one feel safer and more secure. Reach out to support groups, healthcare providers, and other caregivers who understand what you're going through.

If you need support or have questions about managing hallucinations in LBD, contact your healthcare provider or a local LBD support group..

Together, we can make this journey a little easier.

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IMPORTANT: This website is informational only and does not provide medical advice, diagnosis, or treatment. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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