Researchers are only beginning to understand the complications of Lewy body dementia.
Researchers are only beginning to understand the complications of Lewy body dementia. (For Spectrum Health Beat)

Alzheimer’s disease has long been a familiar ailment in society.

Maybe too familiar.

A minor memory lapse, and people automatically think they have the brain disorder. Some even try to joke it off with comments like, “I think I’ve got Alzheimer’s.”

But the disease is no laughing matter. And perhaps more importantly, the problem may not be Alzheimer’s but something that still needs serious attention.

Something like Lewy body dementia.

Experts on brain dysfunction are learning more about this disorder, a complicated and often misunderstood ailment.


The disease gained some attention recently in the media, after it was reported that actor Robin Williams had battled this leading up to his suicide.

Williams’ widow, Susan Williams, recently told People magazine her husband suffered from Lewy body dementia, a progressive brain disease that has many symptoms. In the last year of his life, the actor experienced worsening anxiety attacks, delusions, trouble moving and muscle rigidity. He was well aware of the problems but he could do nothing about them, his wife told the magazine.

These physical problems, combined with the fact the actor was aware of them, are classic symptoms of Lewy body dementia.

The disease has only been recognized in the medical field in the past few decades, although much has been learned since then, and researchers continue to probe it in hopes of uncovering more.

Even as Alzheimer’s accounts for the vast majority of primary dementia cases—about 85 percent—Lewy body dementia may be responsible for 4 percent to 12 percent of cases, depending upon what part of the world is being looked at.

Lewy body dementia has traits of Alzheimer’s, but it’s still vastly different. In many instances, it’s more akin to Parkinson’s disease.

(Lewy body dementia) is a disorder of thinking and some other areas of brain function that is a progressive disease associated with the accumulation of the Lewy body material in the nerve cells of the brain,” said James Tucci, MD, a neurologist with Spectrum Health Medical Group. “That material, which is a collection of abnormal proteins, is also found in the cells of Parkinson’s sufferers.”

The brains of people with Lewy body dementia show changes in some ways similar to those of Alzheimer’s Disease, but with a different accumulating protein and in different brain regions, Dr. Tucci said.

In all of the disorders—Lewy body, Parkinson’s and Alzheimer’s—there is a progressive, incurable deterioration of the brain.


Experts differ over the frequency of Lewy body dementia. It wasn’t accepted internationally until 1996, although there was one case diagnosed in 1961 in Japan. The first firm criteria for identifying the disease was established in 2005.

“We have, over the past 30 years, gradually become aware that a very significant percentage of people who develop a serious thinking disorder … but rather have Lewy body dementia or one of the more rare primary dementias known as the frontotemporal lobar dementias,” Dr. Tucci said.

If a patient has Lewy body dementia, generally there’s a deterioration of brain function, the doctor said. This can manifest itself as vision problems, for instance, or as decision-making problems.

And yet, a memory problem—the primary symptom associated with Alzheimer’s disease—is not necessarily the main feature of Lewy body dementia.

Patients with Lewy body dementia may have only minor memory problems at the onset and they often are aware of their deterioration. This was the case with Robin Williams.

In addition to problems related to thinking, there are three major features of Lewy body dementia. Dr. Tucci explained:

  1. Hallucinations: A tendency to experience visual hallucinations. Patients usually see other people or animals moving, and the visions come and go.
  2. Motor problems: Lewy body dementia patients have Parkinson’s-type motor problems, such as slow or weak movements of the limbs or rigid muscles.
  3. Variations: There are always strange variations in the symptoms from day to day. One day the person has normal mental functions, the next day there’s abnormal activity to the point where they may be sleeping all the time. Minor Lewy body symptoms include the strange behavior of acting out one’s dreams—they physically may be running, walking, talking or fighting.

There is no single accepted test to diagnose Lewy body dementia, although some type of neuro imaging—such as an MRI, or PET or SPECT scan—is often done to identify abnormal neurotransmitter distributions.

Another test examines certain substances in the spinal fluid, but this isn’t yet widely used.

The best way to reach a conclusion: Determine if the patient meets a number of the core criteria, Dr. Tucci said.


Unfortunately, there aren’t many ways to treat the disorder. Drugs used on Alzheimer’s patients can help Lewy body dementia patients, but if the wrong medication is prescribed a person can experience a severe reaction.

If you suspect a relative is acting strangely—seeing things that aren’t there, or showing an inability to make decisions—you should bring your concerns to a family physician.

It’s important to note: Many physicians will often not immediately recognize the unusual pattern of symptoms of Lewy body disease as a neurologic disease and refer the patient to a specialist in the neurosciences, Dr. Tucci said. It’s often up to the patient, who may suspect something is wrong and feel the need to seek help. (This is the opposite of Alzheimer’s patients, who usually deny the problem.)

Once diagnosed, the prognosis is not good.

People will live with the slow, progressive deterioration of the brain, Dr. Tucci said adding “survival is usually longer than in Alzheimer’s disease, typically six years or more from the time of diagnosis.”

Lewy body dementia is found more often in men than women, by a 2-1 margin, and usually in people in their 50s and 60s. It affects about 1.3 million Americans.

While the general public and even some primary care physicians may not immediately recognize the symptoms of the disease, there is one simple course of action.

“When you think something is wrong with a loved one and you see features such as personality changes—but the memory seems to be pretty good—you know right away you need to see someone with expertise in neurologic diseases,” Dr. Tucci said.

For more information on Lewy body dementia or similar diseases, visit the Spectrum Hospital Medical Group Memory Disorders Clinic.