Understanding Lewy Body Dementia

About LBD

Feb 2

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When Ed was 75, life gave us a gut punch with 5 words from the doctor: "Ed has Lewy Body Disease." We left the neurologist's office in a fog of confusion, hardly saying anything on the way home, both trying to process what we had just been told.

Lewy Body Dementia is the second most common type of progressive dementia after Alzheimer's disease. Yet, when I first heard the diagnosis, I had so many questions. In the simple terms:

LBD occurs when abnormal protein deposits, called Lewy bodies, build up in the brains areas involved in thinking, memory, and movement.

Think of the brain like a busy city. In a healthy brain, information travels smoothly along neural pathways, like cars on well-maintained roads. With LBD, it's as if there are roadblocks (Lewy bodies) in various parts of the city, disrupting the normal flow of traffic. This disruption leads to the various symptoms we see in our loved ones.

Let me break it down for you.

The LBD Journey: Not Your Typical Dementia

Most people are familiar with Alzheimer's disease, which typically shows a steady, predictable decline. But LBD is different. It’s progression is more like a roller coaster than a slide – there are ups and downs, unexpected turns, and sometimes periods where things seem to level out.

With LBD, your loved one might be clear and engaged during breakfast, but confused by dinner. They might have several good days followed by challenging ones. This day-to-day variability is a hallmark of LBD, and understanding this pattern can help you prepare for and manage these changes.

Understanding LBD & the Brain

Just as your city has different neighborhoods handling specific functions – residential areas, business districts, transportation hubs – your brain has specialized regions. When Lewy bodies build up in these areas, they disrupt normal function in distinct ways. Let's explore how this affects each region.

Frontal Lobe Changes

Think of your frontal lobe as city hall – it's where planning happens and decisions are made. When LBD affects this area, you might notice:

Changes in planning abilities (like managing a daily schedule)
Different approaches to solving problems
Shifts in judgment or decision-making
Changes in personality or behavior

These changes explain why someone who was once a meticulous planner might suddenly struggle to organize their day.

Temporal Lobe Impact

Your temporal lobe is like your city's cultural center, storing memories and processing language. LBD affects this area differently than Alzheimer's:

Words might be hard to find, like having them on the tip of your tongue
Recent memories might be fuzzy one day but clear the next
Understanding speech might become more difficult
Emotional responses might change

The key difference from Alzheimer's? These symptoms often fluctuate rather than showing steady decline.

Parietal Lobe Effects

The parietal lobe is like your brain's spatial awareness center – imagine it as your city's navigation system. When LBD affects this region, it's like having a GPS that sometimes gives incorrect information:

Spatial awareness becomes confused (misjudging distances or space between objects)
Coordination becomes challenging (like having an unreliable map of where your body is in space)
Reading directions might become difficult (like having street signs that keep changing)
Daily tasks requiring coordination become tricky (such as buttoning clothes or using utensils)

This explains why someone might bump into furniture they've lived with for years or struggle with tasks they've done thousands of times before.

Occipital Lobe Changes

Think of your occipital lobe as your brain's visual processing center – like having a TV station that processes everything you see. When LBD disrupts this area:

Visual processing becomes unreliable (like having a TV with poor reception)
Hallucinations might occur (the brain creates images from its own "programming")
Depth perception changes (making it hard to judge steps or curbs)
Pattern recognition might be affected (familiar objects might look different)

This is why many people with LBD experience visual hallucinations – their brain's "TV station" is creating its own content. These hallucinations are often very real to them, even though others can't see them.

Brain Stem and Cerebellum Impact

These regions are like your city's basic infrastructure and maintenance crew. They handle automatic functions and movement control. When LBD affects these areas:

Movement becomes less smooth (like driving on a bumpy road)
Sleep patterns change (the body's "night shift" doesn't work properly)
Basic body functions fluctuate (like having unreliable utility services)
Balance becomes less stable (as if the ground isn't quite level)

Problems in these areas often appear early in LBD, sometimes years before other symptoms develop.

What Makes Each Person's LBD Experience Unique

Just as every city has its own character, each person's experience with LBD is unique. The way Lewy bodies spread through the brain varies like traffic patterns differ in each city:

Symptoms might appear in different orders
Some areas might be more affected than others
The rate of change varies from person to person
Good days and challenging days follow no set pattern

Recognizing the Early Signs

Early recognition of LBD is like catching traffic problems before they cause major delays. Watch for:

Sleep changes, especially acting out dreams
Movement becoming less fluid or balanced
Visual processing changes or hallucinations
Attention and alertness that varies significantly
Changes in basic body functions

These early signs are important clues to share with healthcare providers.

Don’t Blame Yourself

It’s easy to fall down the slippery slope of “If only”. Been there, got the tee shirt.

Like most who have finally been diagnosed it’s easier to see the signs more clearly when you’re looking back. Don’t blame yourself for not seeing it sooner.. I can’t tell you the number of times I’ve heard, “but I had never even heard of it”.

Understanding Leads to Better Care

Understanding how LBD affects different brain regions is like having a detailed map – it helps you understand the changes you’re seeing and navigate challenges. It will also help you better communicate with your doctors.

Remember, while each person's journey with LBD is unique, understanding the basics of how it affects the brain gives you a stronger foundation for providing care. Like any city dealing with infrastructure challenges, there will be good days and difficult days. The key is being prepared and knowing what to expect.

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IMPORTANT: This website is informational only and does not provide medical advice, diagnosis, or treatment. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.