Diagnostic 28 January 2026

Lewy bodies: when memory loss isn’t the only symptom

Imagine starting to see things or people that aren’t there. Imagine realizing that your body is becoming more rigid, or that your attention fluctuates throughout the day for no apparent reason. This is what many people with Lewy body dementia experience, a neurodegenerative disease that is still not well understood, but is one of the most common causes of degenerative dementia, second only to Alzheimer’s disease.

In 1912, a German neurologist named Friedrich Heinrich Lewy first observed abnormal protein plaques inside the neurons of the brains of people with Parkinson’s disease. These Lewy bodies are deposited in different areas of the brain and disrupt its functioning.

Biologically, these “bodies” are aggregates of a protein called alpha-synuclein. In a healthy brain, this protein plays a role in communication between neurons, but when it misfolds and accumulates, it alters key functions such as thinking, movement, behavior, and mood. These same structures are also involved in Parkinson’s disease, which explains why both conditions share symptoms.

Beyond memory loss

Unlike Alzheimer’s disease, where memory loss is usually the first sign, in Lewy body dementia the initial symptoms can be very diverse. Among the most characteristic are cognitive fluctuations (periods of marked clarity alternating with episodes of confusion), recurrent visual hallucinations, and motor symptoms such as rigidity or slowness of movement. Sleep disorders are also common, especially REM sleep behavior disorder, in which the person “acts out” their dreams while asleep. These symptoms can appear years before diagnosis, making LBD a real clinical challenge.

A disease that is difficult to diagnose

Precisely because of this diversity of manifestations, Lewy body dementia is often diagnosed late or mistaken for Alzheimer’s disease or Parkinson’s disease. However, an accurate diagnosis is crucial, as people with Lewy body dementia can react adversely to some commonly used antipsychotic medications. Actor Robin Williams is probably the most well-known case of Lewy body dementia. After his death in 2014, an autopsy revealed that he had the disease, which helped raise awareness of a condition that had previously received little public attention. His widow, Susan Schneider Williams, has spoken on several occasions about the confusion they experienced in the face of changing and hard-to-understand symptoms. At Ace Alzheimer Centre Barcelona, we specialize in the accurate diagnosis of neurodegenerative diseases. By combining a multidisciplinary approach with the use of biomarkers, we achieve a more precise diagnosis and personalized treatment, thereby improving the quality of life of patients and their families.

What science says

Research into Lewy body dementia has advanced considerably over the past decade, although many questions still remain unanswered. Some notable scientific publications that can be consulted for further information include:

At Ace, we have also made our own contribution with articles such as:

In addition, global initiatives such as the Dementia with Lewy Bodies Consortium have contributed to standardizing diagnostic criteria and strengthening international collaborative research.

Research and hope

Although Lewy body dementia currently has no cure, research is progressing. A better understanding of the biological mechanisms of Lewy bodies opens the door to new treatments and early diagnostic strategies. At Ace, clinical research and person-centered care go hand in hand with a clear goal: transforming scientific knowledge into better care for people living with dementia.

Talking about Lewy body dementia means giving a voice to thousands of individuals and families. Understanding it is the first step toward earlier detection, better treatment, and moving toward a future with more answers.