What Is Dementia with Lewy Bodies?
Dementia with Lewy bodies (DLB) is one of the most common forms of dementia after Alzheimer's disease. Yet it remains underrecognized and is still frequently mistaken for Alzheimer's, leaving many patients and families without a clear explanation for what they are experiencing.
Not Just Memory Loss
Unlike Alzheimer's disease, DLB may not begin with a prominent memory deficit. Early symptoms often include changes in attention and alertness, visual hallucinations, and sleep disturbances.
Symptoms Can Fluctuate
A person may seem clear and engaged at one moment, then confused, sleepy, or withdrawn later. Parkinson-like movement changes can also occur, but they are often not the main problem.
What Happens in the Brain?
DLB is characterized by the abnormal accumulation of alpha- synuclein protein inside nerve cells. These deposits form Lewy bodies, which gave the disease its name.
RECOGNIZING THE SYMPTOMS
Symptoms Can Look Different - and Change Over Time
Dementia with Lewy bodies can affect several areas of life at the same time. Some symptoms are visible to others, while some are harder to recognize - but all can shape daily life, comfort, and independence.
Thinking and Attention
People may have difficulty concentrating; organizing tasks, following conversations, or judging distances. Memory can be affected too, but attention and visual processing problems are often more noticeable at first.
Fluctuations in Alertness
Mental clarity can change unexpectedly. A person may seem alert and engaged at one moment, then sleepy, confused, or withdrawn later.
Visual Hallucinations
People may see individuals, animals, or objects that are not present. These experiences are often vivid and detailed.
Sleep Disturbances
REM sleep behavior disorder is a key feature. People may talk, shout, kick, or act out dreams during sleep - sometimes years before other symptoms appear.
Movement Changes
Slowness, stiffness, reduced facial expression, shuffling gait, or impaired balance can make everyday activities harder and increase the risk of falls.
Autonomic and Mood Symptoms
Dizziness when standing, constipation, urinary problems, depression, anxiety, or delusions may also occur and can strongly affect comfort and independence.
More Than One Symptom - and More Than One Challenge
Because DLB affects thinking, movement, sleep, perception, and automatic body functions, recognizing the full symptom pattern is essential to better care, earlier diagnosis, and more support for patients and families.
AN EARLY WINDOW FOR CHANGE
The Earliest Stage May Be Our Best Chance
In most cases, dementia with Lewy bodies starts many years before a diagnosis is made. During this prodromal phase, subtle changes in sleep, attention, thinking, mood, or autonomic function may appear long before dementia becomes obvious.
This is both a challenge and an opportunity. We urgently need diagnostic tools and biomarkers that can detect the disease already in its prodromal phase. American Friends of ParkinsonFonds Deutschland supports this research - with the long-term goal of detecting and stopping the disease at its earliest stage. This early phase may offer the best window to begin a disease-modifying therapy once one becomes available, before cognition, independence, and everyday life are substantially affected.
The Prodromal Phase
DLB can begin quietly, with symptoms that are easy to overlook or misinterpret.
Why Biomarkers Matter
Earlier biological detection could help identify the disease before major cognitive decline occurs.
Why Timing Matters
The earliest stage may offer the best chance to begin a future disease-modifying therapy.
Our Goal
We are committed to accelerating the discovery of reliable biomarkers and advancing research toward disease-modifying therapies. Together, we can detect Dementia with Lewy bodies earlier and stop it before it steals more lives and futures.
Research Must Move Faster.
Dementia with Lewy bodies often begins years before dementia is diagnosed. This early, prodromal phase may be the moment when we have the greatest opportunity to change the course of the disease - yet today, we still lack the biomarkers and targeted therapies needed to act.
American Friends of ParkinsonFonds Deutschland is making early DLB a scientific priority.
We develop and advance focused research projects to identify the disease earlier, understand the biological processes that drive Lewy body pathology, and create disease-modifying therapies designed for the stage when nerve cells may still be protected.
“If we want to prevent dementia rather than simply manage it, we have to find DLB earlier - and learn how to intervene while there is still time to change its course.”
- Martin T. Henrich, MD
Detect Earlier
Develop biomarkers that can identify DLB during its prodromal stages - before dementia becomes established.
Understand What
Drives Disease
Reveal how Lewy body pathology damages vulnerable nerve cells and why the disease progresses.
Intervene Before
It Is Too Late
Advance biologically targeted therapies designed to slow or stop disease while meaningful brain function can still be preserved.