The Stages of Lewy Body Dementia—and Why They’re So Often Misunderstood

Bygallantcodes@gmail.com

Updated April 24, 2025

A Closer Look: From Subtle Signs to Full-Time Care

Wait, What Is Lewy Body Dementia?

If you’re wondering what Lewy Body Dementia actually is, here’s the quick version: it’s a brain disorder caused by abnormal protein deposits—called Lewy bodies—in the brain. These deposits disrupt normal brain function, leading to cognitive decline, movement issues, and behavioral changes.

It sits at the crossroads of Alzheimer’s and Parkinson’s, borrowing traits from both. That’s part of why it’s so tricky to spot at first.

The 3 (Sometimes Blurry) Stages of LBD

LBD doesn’t progress in a tidy, linear fashion, but experts often break it down into three general phases. Here’s how it typically unfolds:

1. Early Stage: The Subtle Shift

This is when things just feel “off.” Memory might seem mostly intact, but there’s a noticeable change in alertness, problem-solving, or attention. Maybe your loved one spaces out mid-conversation or suddenly freezes mid-walk. Hallucinations can also show up shockingly early—people often see things that aren’t there, or hear sounds no one else can hear.

Sleep can also become…well, a bit wild. Rapid Eye Movement (REM) sleep behavior disorder is common, causing people to physically act out their dreams—sometimes violently.

At this point, it’s easy to misdiagnose LBD as depression, mild cognitive impairment, or even early Parkinson’s.

2. Middle Stage: Things Get Tangled

Here’s where cognitive decline picks up. Memory lapses may deepen, visual hallucinations become more frequent, and confusion can make it hard to follow conversations or navigate routines. Motor symptoms like tremors, stiffness, and slow movement creep in—sometimes resembling Parkinson’s disease.

Fluctuating cognition becomes a daily battle. Your loved one might be lucid and chatty in the morning but completely disoriented by dinner. It’s frustrating and scary for everyone involved.

During this phase, safety becomes a growing concern, and caregiving typically becomes a full-time job.

3. Late Stage: Full Care Mode

At this point, independent function is mostly lost. Walking and talking may become limited, and swallowing issues or incontinence can develop. Hallucinations may intensify, and dementia symptoms overlap heavily with late-stage Alzheimer’s.

There’s often increased susceptibility to infections like pneumonia. Comfort care, physical therapy, and sometimes hospice support become part of the day-to-day care plan.

The Lewy Body Dementia Association offers incredibly helpful resources and community support.

So, Why Did Robin Williams’ Diagnosis Matter So Much?

Before Robin Williams’ death in 2014, Lewy Body Dementia was rarely discussed in the public. His widow, Susan Schneider Williams, later revealed that doctors only diagnosed him correctly after his death—and that it explained his spiraling anxiety, paranoia, memory loss, and motor symptoms.

This revelation sent a ripple through the medical community and mainstream media alike. Awareness skyrocketed. Families struggling with misdiagnoses suddenly had a new framework. It was a heartbreaking but powerful moment for visibility.

You can read more about Susan’s account in her editorial in Neurology: “The Terrorist Inside My Husband’s Brain”.

Living With LBD: What Can Help?

While there’s no cure, there are ways to make life easier and safer for those living with LBD. Treatment focuses on managing symptoms and supporting the person holistically.

• Medication may help with hallucinations, movement problems, or mood shifts, but it must be used carefully—some antipsychotics can worsen LBD symptoms.
• Occupational therapy and physical therapy can boost mobility and safety.
• Routine and structure can help with cognitive swings and confusion.
• Support groups are a game-changer, especially for caregivers navigating this emotional rollercoaster.

And most importantly? Early recognition. Knowing what you’re dealing with—even if it’s tough—makes a world of difference in planning care and managing expectations.

Check out this comprehensive overview on Healthline for more.

The Takeaway

Lewy Body Dementia is complex, heartbreaking, and way more common than many of us realized—until Robin Williams’ story pulled back the curtain. From subtle signs in the beginning to the need for round-the-clock care in the later stages, the progression can be tough, but understanding it is the first step toward better care and support.

If someone you love is showing signs—or if you’re just feeling unsure—it’s okay to ask questions, trust your gut, and get curious about what’s really going on. You’re not alone in this.