The Caring Corner®
Lewy Body Dementia: Identifying the Signs and Navigating the Diagnosis
Finding out that a loved one has Lewy Body Dementia (LBD) can feel like stepping into a fog. It’s a complex, often misunderstood condition that doesn’t follow the “typical” path of memory loss we see in Alzheimer’s.
If you’re navigating this diagnosis, know that you aren’t alone. Here is a breakdown of what LBD really is, what to look for, and how to find a path forward.
What is Lewy Body Dementia?
Lewy Body Dementia is the second most common type of progressive dementia after Alzheimer’s disease. It is caused by the buildup of abnormal protein deposits—called alpha-synuclein—in the brain. These deposits are named “Lewy bodies” after the neurologist who first discovered them.
These protein clumps disrupt the brain’s chemical messengers, particularly dopamine (which affects movement) and acetylcholine (which affects memory and learning).
The “Clinical Umbrella”
LBD actually covers two related diagnoses:
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Dementia with Lewy Bodies (DLB): Cognitive symptoms appear first or within one year of movement symptoms.
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Parkinson’s Disease Dementia: A person is first diagnosed with Parkinson’s, and cognitive decline begins a year or more later.
4 Key Symptoms to Watch For
LBD is often called a “rollercoaster” because symptoms can change drastically from hour to hour.
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Fluctuating Alertness: This is a hallmark of LBD. A person may be sharp and engaged one moment, then excessively drowsy, “staring into space,” or disorganized the next.
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Visual Hallucinations: Unlike other forms of dementia, LBD often involves detailed, realistic hallucinations (like seeing people or animals that aren’t there) early in the progression.
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Movement Issues: Because it shares biological roots with Parkinson’s, LBD often causes tremors, stiff muscles, a shuffling gait, or frequent falls.
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REM Sleep Behavior Disorder: Many people with LBD “act out” their dreams—shouting, kicking, or falling out of bed—often years before cognitive symptoms appear.
Tips for Caregivers: Navigating the Fog
Caring for someone with LBD requires a high level of patience and a specific approach to communication.
1. Simplify the Environment
Because LBD affects depth perception and visual processing, “clutter” can be terrifying. Remove busy rugs (which may look like holes) and ensure rooms are brightly lit to reduce shadows that can trigger hallucinations.
2. Don’t Argue with Hallucinations
If your loved one sees something that isn’t there, don’t try to “logic” them out of it. If the hallucination isn’t scary, it’s often best to acknowledge their feelings and gently redirect their attention.
3. Establish a Routine
While the symptoms fluctuate, the schedule shouldn’t. A predictable routine for meals, medication, and sleep can help anchor a person who feels disoriented by their shifting cognitive clarity.
4. Watch for Medication Sensitivity
Crucial Note: People with LBD can have severe, life-threatening reactions to certain antipsychotic medications. Always ensure your medical team is experienced with LBD specifically, not just general dementia.
Finding Support
The journey with LBD is taxing—emotionally and physically. Connecting with groups like the Lewy Body Dementia Association (LBDA) can provide resources and, more importantly, a community of people who truly understand the “fluctuating” nature of this disease.
Focus on the “good hours,” be kind to yourself as a caregiver, and take things one day at a time.
