has been extensive media coverage on the life and death of legendary actor, Robin Williams. One recent revelation made about one year following his sudden death was that Williams had been living with Lewy Body dementia (LBD). What does that really mean? When most people hear about dementia, they associate it with Alzheimer’s disease. But LBD is a complex and progressive disease which actually affects more than 1 million Americans.
A September 2015 booklet developed by the National Institutes of Health (National Institute on Aging and National Institute of Neurological Disorders and Stroke), titled “Lewy Body Dementia” outlines the disorder and its types and steps to take following diagnoses. It can be found online at https://www.nia.nih.gov/alzheimers/publication/lewy-body-dementia/introduction or in PDF form at https://d2cauhfh6h4x0p.cloudfront.net/s3fs-public/lewy-body-dementia.pdf.
German neurologist Dr. Friederich Lewy coined the term “Lewy bodies” in 1912. They are abnormal protein deposits which clump within neurons. This process makes neurons work less effectively and then die. Lewy bodies affect several different brain regions including the cerebral cortex, limbic cortex, hippocampus, midbrain, and brain stem. LBD includes two related conditions. The first is dementia with Lewy bodies. This is a mental decline that resembles Alzheimer’s disease, however over time patients also develop distinctive symptoms such as visual hallucinations, fluctuations in cognitive ability, slowness and difficulty with movement, sensitivity to medications used to treat hallucinations, and REM sleep behavior disorder. The other type of LBD is Parkinson’s disease dementia. This starts with a movement disorder which can include muscle stiffness, shuffling walk, and tremors. Following these symptoms, cognitive symptoms of dementia and mood and behavior changes may arise. The booklet does clarify that not all people diagnosed with Parkinson’s disease develop dementia, however being diagnosed late in life has been shown to be a risk factor.
Sleep disorders are an underdiagnosed symptom of LBD. They can include excessive daytime sleepiness, insomnia, and restless leg syndrome. REM sleep behavior disorder is a condition in which a person seems to act out dreams thereby talking in one’s sleep, falling out of bed, or engaging in violent movements. Statistics have shown that REM sleep disorder can appear in some people years prior to other symptoms of LBD.
Medical professionals generally state that if cognitive symptoms appear within a year of movement problems, the diagnosis is dementia with Lewy bodies. Conversely, if cognitive problems develop more than a year following the start of movement problems, the diagnosis is Parkinson’s disease dementia. Dementia with Lewy bodies has been known to progress more quickly than Parkinson’s disease dementia. While people may start with a family doctor to consult about symptoms, a neurologist, neuropsychologist, and psychiatrists should be consulted because they have the expertise needed to diagnose LBD. In order to distinguish LBD from other illnesses, evaluations can include an examination of medical history, medical and neuropsychological tests, and brain imaging.
There is no way by which to definitively diagnose LBD other than by brain autopsy after death. Researchers are studying ways to more accurately diagnose LBD in the living brain. One topic of investigation is measuring proteins in cerebrospinal fluid via a lumbar puncture or spinal tap.
Consult the booklet titled “Lewy Body Dementia” at one of the links noted above for more details regarding medications, caregiver support, and planning for the future following a diagnoses of LBD. It is imperative that we do not make hasty assumptions about the new behaviors and symptoms of a loved one. Understanding the different diagnoses and options for treatment is a crucial step in the planning process.
At Weatherby & Associates, PC, we will work to help LBD patients and their families plan the necessary legal steps while living with this disease and its complex symptoms. For more information on our practice, contact the firm at (860)769-6938.