🧠 Understanding Lewy Body Dementia: What Families and Caregivers Need to Know

By Melissa J Long, CTRS | October 15, 2025

When most people hear the word "dementia," they think of Alzheimer’s disease. But there's another common—and often misdiagnosed—form of dementia called Lewy Body Dementia (LBD), which affects over 1.4 million people in the U.S. alone.

LBD is complex and often misunderstood, making it especially challenging for families and caregivers. This blog breaks down what you need to know about LBD, including symptoms, diagnosis, and support resources to help you navigate this journey with more confidence and compassion.

💡 What Is Lewy Body Dementia?

Lewy Body Dementia is a progressive neurological disease caused by the buildup of abnormal protein deposits called Lewy bodies in the brain. These protein clumps affect chemicals that impact thinking, memory, movement, behavior, and mood.

LBD is actually an umbrella term for two related diagnoses:

• Dementia with Lewy bodies (DLB)

• Parkinson’s disease dementia (PDD)

The distinction depends on when cognitive and movement symptoms appear:

• If dementia symptoms come before or within a year of movement problems, it’s typically DLB.

• If movement issues appear first (as in Parkinson's disease), followed by dementia a year or more later, it’s classified as PDD.

🧠Key Symptoms of LBD

LBD often overlaps with symptoms of Alzheimer’s and Parkinson’s disease, which can lead to confusion and misdiagnosis. Here are some hallmark signs:

Cognitive Changes

• Fluctuating alertness and attention

• Confusion or disorientation

Trouble with executive function (planning, organizing)

Movement Symptoms

• Muscle stiffness and tremors

• Shuffling gait

• Balance problems

• Slow physical movements

Visual Hallucinations

• Seeing things that aren’t there (a common early symptom)

Sleep Disturbances

• REM Sleep Behavior Disorder (acting out dreams)

• Daytime drowsiness or insomnia

Autonomic Nervous System Problems

• Sudden drops in blood pressure

• Fainting

• Bladder and digestive issues

  
  

❗ Why LBD Is Often Misdiagnosed

Because LBD shares features with both Alzheimer’s and Parkinson’s, it’s often mistaken for one or the other—leading to misdiagnosis or delayed diagnosis.

Even more critically, some medications used to treat other types of dementia or psychiatric symptoms can severely worsen LBD symptoms, especially certain antipsychotic drugs.

Getting an accurate diagnosis from a neurologist familiar with LBD is essential to ensure appropriate treatment and avoid dangerous side effects.

👥 Caregiver Tips: Supporting Someone with LBD

Caring for a person with LBD is uniquely challenging due to the unpredictable progression and variety of symptoms. Here are some caregiver strategies that can help:

• Establish a calm, structured routine. Avoid overstimulation or big schedule changes.

• Be patient with cognitive fluctuations. Alertness and confusion may vary throughout the day.

• Avoid correcting hallucinations. Reassure your loved one without arguing.

• Manage mobility and fall risks. Work with a physical therapist if needed.

• Track symptoms and medications closely. Some medications, especially antipsychotics, must be used with great caution.

• Take breaks and seek help. Join a support group or ask family members to assist when possible.

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🧭 Trusted Resources for Families and Caregivers

You don’t have to navigate this alone. These resources offer education, support, and practical tools:

• 💙 Lewy Body Dementia Association (LBDA)The leading nonprofit for LBD information, diagnosis support, and caregiving tools🔗 https://www.lbda.org

• 🏥 National Institute on Aging – LBD InformationDetailed guide to symptoms, diagnosis, and care strategies🔗 https://www.nia.nih.gov/health/what-lewy-body-dementia

• 🧠 Mayo Clinic – LBD Overview🔗 https://www.mayoclinic.org/diseases-conditions/lewy-body-dementia

• 👥 Family Caregiver Alliance – Dementia Support🔗 https://www.caregiver.org

• 🧪 ClinicalTrials.gov – LBD Research Studies🔗 https://clinicaltrials.gov/ct2/results?cond=Lewy+Body+Dementia

🗨️ Final Thoughts

Lewy Body Dementia is one of the most complex and misunderstood forms of dementia—but you don’t have to face it alone.

With the right information, medical support, and a community behind you, it is possible to provide compassionate, informed care that improves quality of life—for your loved one and yourself.

💌 Have a story or question about LBD? Share in the comments or reach out—we’re here to listen.

Would you like this blog post designed as a webpage or exported as a PDF handout for caregiver organizations or support groups?