What Is Dementia With Lewy Bodies?

Dementia with Lewy bodies (DLB) is a progressive brain disorder characterized by abnormal protein deposits called Lewy bodies. These deposits disrupt normal brain function, leading to a range of cognitive, motor and behavioral symptoms. DLB is one of the most common types of progressive dementia after Alzheimer’s disease.

Key Features of Dementia With Lewy Bodies

• Lewy bodies: Clumps of alpha-synuclein protein inside neurons, affecting brain regions that control thinking, movement and behavior.
• Cognitive fluctuations: Sudden changes in attention and alertness, often within the same day.
• Visual hallucinations: Clear, detailed visions of things that aren’t there (people, animals or objects).
• Parkinsonism: Slowness of movement, muscle stiffness and tremor similar to Parkinson’s disease.
• Autonomic dysfunction: Problems with blood pressure, digestion, bladder control and temperature regulation.
• Sleep disturbances: Acting out dreams (REM sleep behavior disorder) and fragmented sleep.

Who Gets DLB?

• Usually appears after age 50.
• May be underdiagnosed because symptoms overlap with Alzheimer’s disease and Parkinson’s disease.
• Affects about 5% of people diagnosed with dementia.

Common Symptoms

DLB symptoms vary from person to person. They often progress gradually but can worsen suddenly.

1. Cognitive Symptoms

   • Fluctuating attention and concentration
   • Problems with planning, problem-solving and multitasking
   • Difficulty processing visual information (misjudging distances, shapes)

2. Motor Symptoms

   • Slowness of movement (bradykinesia)
   • Muscle rigidity and stiffness
   • Tremor (less pronounced than in classic Parkinson’s)
   • Changes in gait and posture (shuffling steps)

3. Behavioral and Psychiatric Symptoms

   • Visual hallucinations (early and vivid)
   • Delusions or false beliefs (e.g., someone is stealing)
   • Depression, anxiety or apathy
   • REM sleep behavior disorder (vivid dreams, physical activity during sleep)

4. Autonomic Symptoms

   • Orthostatic hypotension (blood pressure drops on standing)
   • Urinary incontinence or retention
   • Constipation
   • Excessive sweating

Diagnosis

Diagnosing DLB involves a careful review of medical history, symptom patterns and specialized tests:

• Clinical evaluation: Neurological exam and cognitive assessments.
• Laboratory tests: Rule out vitamin deficiencies, thyroid problems and infections.
• Brain imaging: MRI or CT to exclude other causes; dopamine transporter (DaT) scans may support DLB diagnosis.
• Polysomnography: Sleep study to detect REM sleep behavior disorder.

Early and accurate diagnosis helps guide treatment and avoid medications that can worsen symptoms.

Management Strategies

There’s no cure for DLB, but a combination of non-drug approaches and careful medication use can improve quality of life.

Non-Drug Approaches

• Structured routines: Consistent schedules reduce confusion and anxiety.
• Environmental modifications: Improve lighting, remove trip hazards and use clear signage.
• Physical therapy: Maintain mobility, strength and balance.
• Occupational therapy: Adapt home environment and daily tasks to current abilities.
• Speech therapy: Address swallowing difficulties and communication challenges.
• Sleep hygiene: Establish bedtime routines, reduce caffeine and manage sleep environment.

Medications That May Help

• Cholinesterase inhibitors (e.g., rivastigmine, donepezil)
  • Improve cognitive symptoms and reduce hallucinations in some people
• Levodopa
  • Can ease parkinsonism but may worsen hallucinations or confusion
• Melatonin or clonazepam
  • For REM sleep behavior disorder (used with caution due to fall risk)
• Antidepressants
  • SSRIs (e.g., sertraline) for depression and anxiety, used carefully to monitor side effects

Which Drugs to Avoid

People with DLB are particularly sensitive to certain medications. Some can cause severe worsening of movement, cognition or behavior:

• Typical antipsychotics
  • Haloperidol
  • Chlorpromazine
• Certain atypical antipsychotics
  • Risperidone
  • Olanzapine
  • Quetiapine (use only under close monitoring)
• Metoclopramide (for nausea and reflux)
• Promethazine (for allergies or motion sickness)
• Dopamine blockers (many antiemetics and gastrointestinal drugs)
• High-dose benzodiazepines (may increase confusion, falls)

Why avoid these drugs? They block dopamine pathways already impaired in DLB, risking:

• Dramatic worsening of parkinsonism
• Increased confusion, sedation or falls
• Potential life-threatening sensitivity reactions

Always review any new medication with a physician familiar with DLB to prevent harmful interactions.

Living Well With DLB

Supporting someone with DLB involves teamwork among family, caregivers and healthcare professionals:

• Educate caregivers about symptom patterns and triggers.
• Plan for legal and financial decisions early in the disease course.
• Use memory aids (calendars, labels and reminder apps).
• Engage in social activities and gentle exercise to boost mood and function.
• Monitor for mood changes and sleep problems; address promptly.

Free Symptom Check

If you or a loved one is noticing unusual changes in thinking, movement or behavior, consider a free, online symptom check, using the doctor approved Ubie Symptom Checker. You may gain insights and know when to seek medical care.

When to Speak to a Doctor

Seek immediate medical attention if you notice:

• Sudden, severe confusion or hallucinations
• Rapid worsening of movement or swallowing problems
• Signs of dehydration, infection or falls with injury
• Any life-threatening or serious changes in health

For ongoing care, work with a neurologist, geriatrician or dementia specialist to review symptoms, medications and care plans. Always speak to a doctor before starting, stopping or changing any treatment.

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This overview aims to help you understand what is dementia with lewy bodies and which medications to avoid. Early recognition and careful management can improve comfort and safety. Always consult your healthcare team for personalized advice.