Last August, the world was shocked and grieved when beloved comedian Robin Williams took his own life. The media went on about how he had been battling depression. Then news came out that he had Parkinson’s disease, so the media conjectured whether that diagnosis played a role in him deciding to end it all. But as it turns out, Robin Williams may have had Parkinson’s—or a common type of dementia that is often mistaken for Parkinson’s disease or Alzheimer’s. In fact, medication that Williams was taking for Parkinson’s may have worsened his dementia symptoms, possibly even driving him to suicide!
The disease that Williams’s doctors apparently never detected is called Lewy body dementia. Because doctors and other medical professionals are just learning about how to distinguish this dementia from other types, it can take longer—up to 18 months—to get a correct diagnosis. This can have tragic consequences, as Robin Williams’s sad story seems to show. So arm yourself with information about this kind of dementia.
WHY IT’S A TRICKY DIAGNOSIS
Lewy body dementia (also called dementia with Lewy bodies) is a condition in which small, orblike proteins called Lewy bodies begin to form in brain cells, ultimately crowding out the normal structures of those cells. The exact diagnosis can be made only at autopsy, and that is, in fact, when Robin Williams’s diagnosis was made. But the clinical knowledge to distinguish Lewy body dementia from Alzheimer’s or Parkinson’s in the living has greatly improved in the past 10 years—and now this information needs to get out there.
“The early symptoms of Lewy body dementia usually involve cognitive and psychiatric problems, whereas early symptoms of Parkinson’s disease are usually related to problems with movement,” said Susan Maixner, MD, an associate professor of psychiatry and director of the Geriatric Psychiatry Clinic at the University of Michigan Health System. As the two different but related diseases progress, they look more and more alike because a degree of Lewy body–protein buildup also occurs in Parkinson’s disease.
Lewy body dementia also can be difficult to distinguish from Alzheimer’s disease because the symptoms of cognitive decline are similar. But, unlike with Alzheimer’s disease, short-term memory loss is usually not the first symptom, said Dr. Maixner. “In contrast to Alzheimer’s, people with Lewy body dementia have early challenges with problem-solving. They can fluctuate between having normal and very confused days, and often see things that aren’t there—most commonly little people or animals. Depth perception can be off, and they are more sensitive to medications given to treat hallucinations,” she explained. REM sleep disorder, a condition in which you physically act out dreams because the brain chemistry that keeps your body still while asleep does not kick in, is also more common with Lewy body dementia. There’s also a higher risk of dizziness and falls in people with Lewy body dementia because one of the symptoms is a sudden drop in blood pressure.
If you notice signs of dementia in yourself or someone you know, the diagnostic process starts by getting a good medical exam to rule out other possible causes of cognitive decline, such as a vitamin deficiency or thyroid disease. Although brain scans can’t diagnose Lewy body dementia, an MRI or CT scan can help rule out mini-strokes or brain tumors. In fact, the process of diagnosis is similar to that for Alzheimer’s disease, discussed in a Daily Health News article on early-onset Alzheimer’s.
Like Alzheimer’s and Parkinson’s, Lewy body dementia is progressive (symptoms can be expected to worsen over time) although medication, complementary therapies and lifestyle modification can slow down the disease symptoms. Still, those affected will ultimately need to be in the care of another person or placed in a long-term-care facility.
Drugs called cholinesterase inhibitors (such as rivastigmine/Exelon and donepezil/Aricept), which are used to slow the worsening of dementia symptoms in Alzheimer’s, are also used to treat Lewy body dementia, and some studies suggest that they are more effective in treating Lewy body dementia than Alzheimer’s. Levodopa, the key medication to control movement in Parkinson’s disease, is also used in patients with Lewy body dementia who have Parkinson’s symptoms, such as rigid muscles and slow movements, but it can intensify symptoms of confusion, delusions and hallucinations in some people. “Antipsychotic drugs, which are given for hallucinations, can worsen walking problems, other Parkinson-like symptoms and confusion,” said Dr. Maixner.
Having a safe, uncluttered, comfortable environment prepared for you or an affected loved one is preferable to medications, she said, adding that physical, social and mental activity can slow down symptoms. In addition, establishing routines and predictability to provide the affected person with a sense of structure is important. “However, due to the severity of some Lewy body symptoms, a person’s quality of life can be improved through careful use of medications if the above strategies are not enough,” she said.
Complementary nondrug treatments of benefit include physical therapy to fortify cardiovascular and muscular health and gait…speech therapy to help improve enunciation…occupational therapy to help maintain skills and promote independence…and treatments, such as music therapy or aromatherapy, to reduce anxiety and improve mood.
More information on Lewy body dementia, including information on support groups for patients, families and caregivers, can be found on the website of the Lewy Body Dementia Association.