I recently learned of a friend’s Lewy body diagnosis. This prompted me to dust off and finish a blog post I started some time ago. Lewy bodies, after all, accounts for as much as 15% of dementia cases.
Robin Williams Death Caused By Lewy Body Dementia
On August 11, 2014 I heard on the radio that Robin Williams had committed suicide.
I fell in love with Robin’s rowdy, insane style of comedy immediately when I first saw him on an episode of Happy Days. That was probably 1970. After that I followed his career closely. Dead Poet Society is still one of my favorite movies — not just one of my favorite Robin Williams’ movies.
Early reports indicated that Robin took his life because of depression. He was, in fact, struggling with depression before his death. However, we later learned that dementia with Lewy bodies probably caused that depression. As we will see, depression is a common symptom of this disease.
A few months before his death Williams learned of a Parkinson’s disease diagnosis. He started experiencing physical symptoms including Parkinsonism late in the previous year. Symptoms of dementia, including paranoia, increased following the diagnosis.
An autopsy following his death (I think Robin would appreciate the humor there) revealed that he more likely had dementia with Lewy bodies.
What is Dementia with Lewy Bodies?
Lewy body dementia is, in fact, the second or third most common cause of dementia, depending on who you ask. According to the Lewy Body Dementia Association the disease, “affects an estimated 1.4 million individuals and their families in the United States.”
Like Alzheimer’s disease, age is the greatest risk factor for dementia with Lewy bodies. Otherwise, we know very little about the causes, risk factors, or lifestyles that may be associated with Lewy body dementia. One way that Lewy body dementia differs from Alzheimer’s is that more men are affected than women.
Lewy body dementia is not the same as Alzheimer’s
Lewy body dementia is like Alzheimer’s disease in several ways. Deposits of mis-folded protein damage brain cells in much the same way as do the plaques and tangles of Alzheimer’s disease. Dr Friedrich Lewy first described “spherical…neuronal inclusions” he found post mortem in the brain of a Parkinson’s patient. Coincidentally, this happened shortly after Dr. Alzheimer presented his findings describing the plaques and tangles that are now hallmarks of Alzheimer’s disease.
In both conditions neuronal damage continues over time, accounting for the progressive nature of the diseases. As with Alzheimer’s, no one knows if Lewy bodies are the cause or an effect of the disease.
Lewy body and Alzheimer’s dementia share many symptoms, but the two diseases are also very different. Alzheimer’s disease progresses through the brains of its victims in a very predictable way. It begins in the area of the hippocampus. By the time it is done almost every part of the brain has lost significant mass. The order in which different areas are affected is essentially the same in everyone. You can read more about how Alzheimer’s affects the brain in The Alzheimer’s Brain.
Lewy bodies, on the other hand, affect the brain in two entirely different ways and cause two related but different conditions, dementia with Lewy bodies (DLB) and Parkinson’s disease dementia. The two eventually have similar symptoms, but the symptoms do not appear in the same order. This is due to the fact that the misfolded protein begins to accumulate in different parts of the brain. Generally speaking, Parkinson’s disease affects the body first, Dementia with Lewy Bodies affects the brain first.
Two Ways Lewy Bodies Affect the Brain
- Dementia with Lewy Bodies – Lewy bodies distributed throughout the cerebral cortex, the outermost layer of the brain. The cerebral cortex is responsible for thinking, language, memory, and attention, and for processing information from the five senses.
- Parkinson’s Disease Dementia – Lewy bodies in the substantia nigra, located in the midbrain, generally results in Parkinson’s disease dementia . The substantia nigra plays an important role in reward, learning, and movement. If the Lewy bodies move to affect cognitive abilities Parkinson’s becomes Parkinson’s disease dementia.
Another well known and beloved actor is closely associated with Lewy bodies. Michael J. Fox was diagnosed with Parkinson’s disease in 1991. He was only 29 years old. Fewer than 20% of Parkinson’s diagnoses are this early onset type. However, the symptoms of early onset Parkinson’s disease seem to progress more slowly than otherwise.
Fox took a break from acting in 2000 to start The Michael J. Fox Foundation for Parkinson’s Research. However, it was not because his condition left him exhausted. He works tirelessly to advance research and to raise public awareness about Parkinson’s. His candor, his willingness to show how the disease has affected him, has done a lot to break down stigma surrounding the condition. Even now his disease doesn’t seem to be dementia, and we hope that it will not. You can see how the disease affects him in the video below.
An intimate insight into Lewy body dementia and Parkinson’s disease
Sue Williams open up about the death of her husband a year after his suicide. This interview is very instructive.
Michael J Fox talks openly about his battle with Parkinson’s disease with Jane Pauly on CBS Sunday Morning.
Parkinson’s disease and Parkinson’s disease dementia
Symptoms and progression differ between Parkinson’s dementia and dementia with Lewy bodies. This is because the Lewy bodies affect different areas of the brain. Parkinson’s disease begins with and is initially recognized as a movement disorder. The disorder can manifest as tremors, stiffness, slow movement, or a shuffling gait. Posture, balance, and involuntary movement, like eye blinking and facial expression can also suffer.
If dementia symptoms appear more than a year after physical symptoms are noticed, the diagnosis is generally Parkinson’s dementia.
As with Alzheimer’s disease, age is the biggest risk factor for Parkinson’s. Scientists believe that certain environmental factors, including agricultural chemicals increase the risk. There is also a small genetic risk factor. Moreover, like Alzheimer’s there is a neuroinflammatory response associated with the disease, though it is unclear if the inflammation is a cause or the result of the disease.
Symptoms of Parkinson’s Dementia
When the more typical cognitive problems that we associate with dementia become apparent, Parkinson’s disease becomes Parkinson’s disease dementia. However, dementia does not necessarily follow. About 70% of the people with Parkinson’s eventually develop dementia.
According to the National Parkinson Foundation, symptoms include:
- Difficulty concentrating
- Memory problems
- Difficulty learning new material
- Difficulty problem solving
- Mood changes (for example, irritability, impatience, aggression)
- Hallucinations (hearing/seeing things others do not)
- Paranoia (feeling suspicious or distrustful of others)
- Delusions (false, unrealistic or strange beliefs)
Hallucinations are common in many forms of dementia. In fact, her auditory hallucinations were one of our first strong clues that Bernice had dementia. However, hallucinations are more common in Parkinson’s dementia (and dementia with Lewy bodies) than other types.
Dementia with Lewy Bodies
Problems with movement and muscle control (Parkinsonism) that are hallmarks of Parkinson’s are also evident in Dementia with Lewy bodies (DLB). The difference is that dementia (the brain affect) is evident much sooner with DLB than Parkinson’s, usually within a year of the time movement problems are noticed.
Symptoms of Lewy Body Dementia
The symptoms of dementia with Lewy bodies and Parkinson’s disease dementia are almost the same. As Parkinson’s disease progresses to dementia it can affect key areas of cognition, including
- Speaking and communication
- Problem solving
- Abstract thinking
Other possible symptoms include:
- Sleep disorder