When Every Day Can Feel Different
Lewy body dementia affects thinking, movement, and sleep, bringing uncertainty to patients and families.
“Some days he seems like himself again. Other days, it feels as though the disease has taken him somewhere I can’t reach”
What Is Dementia With Lewy Bodies?
Dementia with Lewy bodies 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—sometimes leaving patients and families without a clear explanation for what they are experiencing.
Recognizing the Early Signs
Unlike Alzheimer’s disease, dementia with Lewy bodies may not begin with a prominent memory deficit. Memory can be affected, but characteristic early symptoms often include marked fluctuations in attention and alertness, visual hallucinations, and sleep disturbances—particularly acting out dreams during the special REM sleep phase. Parkinson-like movement disturbances may also occur but are mostly not the main problem. A person may seem clear and engaged at one moment, then confused, sleepy, or withdrawn later.
The Role of Alpha-Synuclein
In the brain, dementia with Lewy bodies 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
Dementia with Lewy bodies can affect several areas of life at the same time. Some symptoms are easily visible, while others may be difficult for people around the patient to understand.
Changes in Thinking
and Attention
People may find it harder to concentrate, organize tasks, follow conversations, make decisions, or judge distances. Memory can also be affected, although difficulties with attention and visual processing may be more noticeable at first.
Fluctuations in Alertness
A distinctive feature is that mental clarity can change unexpectedly. A person may be alert and engaged at one moment but sleepy or confused later. These fluctuations can occur over days, hours, or sometimes even shorter periods.
Visual Hallucinations
People may see individuals, animals, or objects that are not present. These experiences are often vivid and detailed. They may be distressing, but some people experience them without fear.
Sleep Disturbances
REM sleep behavior disorder is a key feature of dementia with Lewy bodies. A person may talk, shout, kick, or act out vivid dreams because the body does not remain still during sleep as it normally would. It can begin years before other symptoms appear and may sometimes cause injury.
Movement Changes
Slowness, muscle stiffness, a shuffling walk, reduced facial expression, or impaired balance may resemble Parkinson-like movement abnormalities. These symptoms can make everyday activities more difficult and increase the risk of falls.
Autonomic Dysfunction
Dementia with Lewy bodies can also affect body functions that happen automatically. This may include dizziness when standing, constipation, urinary problems, changes in seating, or difficulty regarding body temperature. These symptoms can strongly affect comfort, safety, and independence.
Mood and Behavior
Depression, anxiety, delusions, or changes in behavior may occur. These symptoms are part of the disease and are not a personal failing or deliberate choice.
Preserving What Matters Most
Living with dementia with Lewy bodies can mean repeatedly adjusting to changes in thinking, movement, sleep, or perception. The unpredictability can be particularly difficult: abilities that seem lost at one time may partly return later, leaving patients and families unsure of what each day will bring.
Protecting Dignity and Connection
Yet the person remains present behind the symptoms. Familiar voices, meaningful activities, music, photographs, routines, and calm personal contact can continue to provide security and connection. Care should protect not only physical safety but also dignity, identity, relationships, and moments of joy.
An Early Window for Change
In most cases, dementia with Lewy bodies starts many years before a diagnosis is made. The disease develops slowly during the so-called prodromal phase, when subtle changes in sleep, attention, thinking, mood, or autonomous function may first appear. Because these symptoms can have many causes and differ widely between individuals, the disease is rarely recognized by medical professionals at this early stage.
Why Earlier Detection Matters
This is both a challenge and an opportunity. We urgently need diagnostic tools and biomarkers that can detect the disease already in this 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.
“It’s heartbreaking to watch someone you’ve shared your life with become frightened by things they can’t control.”
Research Must Move Faster
“Too many fundamental questions about dementia with Lewy bodies remain unanswered—and patients and families cannot afford for progress to remain slow. We need better ways to recognize the disease before dementia is established, a deeper understanding of how Lewy body pathology damages nerve cells, and treatments that target the underlying biology rather than symptoms alone.” Quote by Martin T. Henrich, MD.
Targeting Disease at Its Earliest Stage
American Friends of ParkinsonFonds Deutschland is committed to advancing this work. We aim to support projects that develop reliable biomarkers for early detection, uncover the disease-driving pathophysiological mechanisms, and create biologically grounded, disease-modifying therapies. The goal is clear: to identify the disease earlier, intervene during the window when nerve cells are still viable, and ultimately slow or stop the disease before it takes away independence, memories, and quality of life.