Millions mourned when comedian Robin Williams hung himself in August 2014, three months after he was diagnosed with Parkinson’s. Later, an autopsy revealed that he had Lewy body dementia (LBD), second most common form of dementia after Alzheimer’s disease. With the right care, people with LBD can get considerable relief and maintain their functioning for years. Sadly, Williams’ didn’t wait. Let us hope that the story of his tragedy will save lives as people come to understand LBD.
LBD eventually gives patients a triple whammy of symptoms associated with Alzheimer’s, Parkinson’s, and anxiety or depression. According to the Lewy Body Dementia Society, some 1.4 million Americans may suffer from LBD at any one time, but it often gets missed or is misdiagnosed as Alzheimer’s, so the number may be much higher.
The signs can build up over a year or two, as proteins in the brain clump up into “Lewy bodies” that spread and impair brain signaling, ultimately affecting your movement, mind, and mood.
William’s first symptoms were gut pains, insomnia, and constipation, according to his widow. He had a tremor in his left hand, and his doctors concluded that he had Parkinson's disease, which causes tremors. Not long afterwards, his vision declined and he walked into a door.
Like Williams, some people are first diagnosed with Parkinson's disease that then leads to dementia. From 4 to 7 percent of people with Parkinson’s carry a gene variant that changes the metabolism of certain fats in the blood and allows them to build up. These people are more likely to develop LBD, some research shows. Research is underway to develop a test of which Parkinson’s patients will slip into dementia. In fact, the man who discovered that the protein alpha-synuclein may clump up in the brain, Friederich H. Lewy, had devoted his career to Parkinson’s.
Other LBD patients first show symptoms that suggest Alzheimer’s: memory loss and short attention spans. Although Lewy body disease can develop without Alzheimer’s disease, at least half of all people with Lewy body disease have some symptoms of Alzheimer’s, and at least one gene variant, “APOE ɛ4,” is a risk factor for both conditions.
Some people have visual hallucinations, disturbing dreams, and changes in blood pressure, temperature, and bathroom functions. Someone with LBD may become highly anxious and agitated, apathetic, or have paranoid delusions. Susan Williams says that LBD drove her husband to suicide, not depression or a resurgence of his former problems with drugs and alcohol.
Because LBD is a multisystem disease, a patient typically needs a team of physicians with different specialties. Medications can manage symptoms. Changes in exercise, diet, and sleep, and other routines also help. But it’s essential to get the right medication. Doctors sometimes prescribe antipsychotics like haloperidol and thioridazine to people with Alzheimer’s, and in people with LBD, they can aggravate movement issues or lead to neuroleptic malignant syndrome, which shows up in a severe fever and rigid muscles. LBD patients may also react badly to medications for Parkinson’s, and anticholinergics, which may be prescribed for incontinence, gastrointestinal cramps, muscular spasms, depression, and sleep disorders.
Patients with symptoms of Alzheimer’s, Parkinson’s, or other strange effects should ask their doctor about LBD. The right diagnosis makes a huge difference.
November 16, 2015
Christopher Nystuen, MD, MBA