Lewy body dementia (LBD) is the second most common cause of dementia in older adults, behind Alzheimer’s disease. “Lewy body dementia” is an umbrella term that includes both dementia with Lewy bodies and Parkinson’s disease dementia.

Unlike some other forms of dementia, LBD can cause hallucinations early in the disease. People with LBD may also experience changes in thinking and attention, movement symptoms, sleep problems, and mood changes. Symptoms usually begin at age 50 or older, although onset can vary.

Understanding what causes hallucinations and how they affect people with LBD can help individuals and caregivers recognize symptoms and respond effectively.

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Why Do Hallucinations Occur in Lewy Body Dementia?

The exact cause of LBD isn’t fully understood. Researchers continue to study how Lewy bodies affect the brain.

Hallucinations likely result from a combination of changes in the brain and in neurotransmitters, the chemical messengers that help brain cells communicate. Sleep problems, sensory issues, medications, and other medical conditions may also contribute.

What Types of Hallucinations Occur in Lewy Body Dementia?

Hallucinations involve seeing, hearing, smelling, feeling, or sensing things that aren’t actually present.

Visual hallucinations are the most common type in LBD. Research suggests that visual hallucinations occur in up to 80 percent of people with LBD, often early in the disease. People with visual hallucinations may see people, animals, or shapes that aren’t there.

Some people may also experience:

• Auditory hallucinations — Hearing voices or sounds, such as footsteps or music
• Olfactory hallucinations — Smelling odors that aren’t present or that others don’t smell
• Tactile hallucinations — Feeling sensations on the skin or movements in the body that aren’t happening

Hallucinations can affect people differently. Some individuals may recognize that the experience isn’t real and may not be bothered by it. For others, hallucinations may be frightening or distressing or may lead to unsafe behavior.

Keep in mind that hallucinations in Parkinson’s disease aren’t necessarily a sign of dementia. However, it’s important to share any new symptoms with your healthcare team.

What Are the Treatment Options for Lewy Body Dementia?

There’s currently no cure for LBD, but a combination of medical treatments and changes to the environment may help reduce hallucinations and improve quality of life.

Look for Temporary Causes

If hallucinations develop suddenly or become much worse, healthcare providers often look for treatable causes such as infection, high fever, medication side effects, dehydration, or sleep problems. Ruling out another medical cause, especially one that can be treated, is an important first step before changing a long-term management plan.

Consider Cholinesterase Inhibitors

Medications called cholinesterase inhibitors may reduce hallucinations and other psychiatric symptoms. Drugs such as rivastigmine (Exelon), donepezil (Aricept), and galantamine may be a first choice when medication is needed to treat hallucinations in LBD.

To help manage thinking, behavior, and other symptoms, cholinesterase inhibitors may be used long term under close medical supervision.

Adjust Parkinson’s Medication

Some medications used to treat movement problems, like levodopa, can contribute to hallucinations in some people. Healthcare providers may adjust medication dosages when hallucinations become troublesome while balancing the need to control movement symptoms.

Discuss Antipsychotic Medications

People with LBD can be extremely sensitive to antipsychotic medications. Serious reactions can include worsening confusion, sedation, severe rigidity, and dangerous declines in physical function. Healthcare providers may consider certain antipsychotic drugs in some cases, but these medications require careful monitoring.

Pimavanserin (Nuplazid) is approved by the U.S. Food and Drug Administration (FDA) for hallucinations and delusions associated with Parkinson’s disease psychosis. However, it’s not FDA-approved for psychosis linked to dementia with Lewy bodies in people who don’t have Parkinson’s disease.

How Should Caregivers Respond to Hallucinations?

Caregivers play an important role in helping a person with LBD feel safe during a hallucination.

When someone with LBD is experiencing a frightening hallucination, it’s important to stay calm and listen to their concerns. Acknowledge any fear or distress, avoid arguing about whether the hallucination is real, and gently offer reassurance. Redirecting the person’s attention to a comforting topic or activity, such as listening to their favorite music, may also help ease distress.

Environmental changes may also reduce hallucinations and confusion. Helpful strategies may include:

• Using bright lighting throughout the home to reduce confusing shadows and visual misinterpretations and prevent safety concerns
• Addressing vision and hearing problems, including making sure glasses prescriptions are up to date and hearing aids are worn as recommended
• Minimizing background noise, such as sounds from the air conditioner or television
• Encouraging stimulating activities

Poor sleep can worsen cognitive symptoms and hallucinations in some people with LBD. Keeping a consistent sleep schedule and staying active during the day may help.

Support groups can also help caregivers navigate daily life with a loved one who is living with LBD.

How Can You Manage Lewy Body Dementia Hallucinations?

LBD hallucinations are common and may occur early in the disease. While some hallucinations may not be bothersome, others can cause distress or affect safety.

Working closely with a healthcare team to identify possible triggers, review medications, and choose appropriate treatments can help manage symptoms. Caregivers can also make a meaningful difference by responding calmly, creating a reassuring environment, and focusing on the person’s comfort and well-being.