By Sylvana Rinehart, Certified Concierge Care Advisor

Alzheimer’s disease and dementia are diseases many of us sadly know firsthand, but there is another one that plagued the late comedian Robin Williams that I would like to write about today because I am seeing more clients with these symptoms. It might be “the most common disease you’ve never heard of,” said Dr. James Galvin, professor of neurology and director of the Lewy Body Dementia Research Center of Excellence of Miami’s Miller School of Medicine. Robin Williams had Lewy body dementia, but it was not revealed until after his death. It’s often misdiagnosed as Alzheimer’s or Parkinson’s disease due to its early similarity to those other neurodegenerative diseases. His wife, Susan Schneider Williams put together a documentary, “Robin’s Wish,” which was released September 1st, 2020, about the final days of Robin Williams. He was diagnosed with Parkinson’s in 2013 but they never understood that he was also suffering from Lewy body dementia until after he took his life in 2014. Sarah Williams said that “my husband had unknowingly been bottling a deadly disease which affected every part of his brain.” The following is going to be technical, intentionally so because of the critical need for accurate diagnosis and understanding.

Affecting about 1.4 million Americans, Lewy body dementias – which include Lewy body dementia and Parkinson’s disease dementia – are the second most common form of dementia after Alzheimer’s disease, according to the Lewis body Dementia Association. Professionals like to describe dementia as the umbrella term to describe disorders of mental processes characterized by memory disorders, personality changes and impaired reasoning due to brain disease or injury.

Lewy body dementia is associated with accumulation of a protein called alpha-synuclein that “builds up and deposits inside of cells and some classic areas of the brain,” said Dr. Ford Vox, medical director of the Disorders of Conscious Program at the Shepherd Center in Atlanta. Parkinson’s disease dementia, the other Lewy body dementia, starts as a movement disorder but progresses to include dementia and mood as well as behavioral changes. When working properly, alpha-synuclein – which is typically present in the brain and in small quantities in the heart, muscles and other tissues – might play a role in regulating neurotransmitters. When this protein aggregates and forms masses (called Lewy bodies) within the brain, the consequences are severe.

The most common symptoms of Lewy body dementia include:

  • Impaired thinking, such as loss of executive function (planning, processing information), memory, or the ability to understand visual information.
  • Fluctuations in cognition, attention or alertness;
  • Problems with movement including tremors, stiffness, slowness and difficulty walking.
  • Visual hallucinations (seeing things that are not present like animals and objects crawling.)
  • Sleep disorders, such as acting out one’s dreams while asleep.
  • Behavioral and mood symptoms, including depression, apathy, anxiety, agitation, delusions or paranoia.
  • Changes in autonomic body functions, such as blood pressure control, temperature regulation, and bladder and bowel function.

It might help to compare some of the symptoms of dementia due to Parkinson’s disease, Alzheimer’s and Lewy body disease.

Some patients exhibit movement disorders that the medical professionals diagnose as Parkinson’s. If those patients develop dementia, then they would be diagnosed as having Parkinson’s disease dementia.

Others may begin with cognitive or memory disorders mistaken for Alzheimer’s disease. More specific changes in their cognitive function over time can lead to the diagnosis of “dementia with Lewy bodies.”

Delusions differ with Parkinson’s and Lewy body. For example, an individual with Alzheimer’s delusions might occur later in the disease process and be ill-formed, appearing mostly as paranoia and mistrust – such as misplacing things and accusing others of stealing, or that the spouse is cheating.

In a person with Lewy body disease, the delusions happen earlier and are well-formed misidentifications – such as looking at a loved one and thinking he or she has been replaced by an identical impostor.

The symptoms at first are similar to Parkinson’s, as hindering one’s ability to work, drive, manage one’s affairs and health; be socially active; dress and shower oneself. With Lewis body dementia, they might also become unable to control involuntary behavior according to Dr. Gavin, resulting in constipation, drooling, low blood pressure and inability to control bodily functions. A person’s inability to visually perceive spatial relationships of objects can lead to injuries. Dr. Gavin further explains that Lewy body disease can cause anxiety, depression and REM sleep disorder in which people lose the muscle paralysis that normally occurs during deep stages of sleep and physically (and sometimes violently) act out their dreams. This is not only detrimental to the patient who needs sleep to nourish the brain, but also to their partner.

Dr. Vox explains that Lewy body dementia is hard to diagnose as you can see from the above examples. With Alzheimer’s, the proteins can be tested but unfortunately with Lewy body dementia, proteins cannot. However, they sometimes might be detected during a hospitalization for something else. Research to improve diagnosis and treatment is underway, but there is no specific Lewy body disease treatment. Patients generally get Alzheimer’s and Parkinson’s disease medications and treating the various symptoms of Lewy body disease with medications “not-fine tuned” for the condition can be a “real art” and quickly fill up a patient’s medicine cabinet. You have to weight costs-benefits of treating this versus that, or get double effect of this medication and a little bit of that as well,” he said.

For those living with Lewy body dementia, medical professionals recommend the same diet, exercise and sleep routines for Alzheimer’s and Parkinson’s disease. Dr. Vox says that exercise is very important in Lewy body dementia because it is biologically related to Parkinson’s disease and shares the same symptoms.

In dealing with a variety of seniors with memory disorder, I have found that an increasing number of general practitioners, neurologists, and other medical professionals are starting to recognize and differentiate the symptoms of Lewy body dementia – the most misdiagnosed dementia – from other diseases. However, more education for the medical professionals and the public is essential. Thank you to Susan Schneider Williams for having the courage and temerity to release “Robin’s Wish.”

Lewy Body Dementia Association (LBDA) is a nonprofit organization providing information and assistance to individuals with the disease, caregivers and medical professionals. Call LBDA at 800.539.9767.

The Alzheimer’s Association can help you learn more about Alzheimer’s and other dementias, and help you find local support services. Call our 24/7 Helpline at 800.272.3900.