Understanding Lewy Body Dementia

October is Lewy Body Dementia Awareness Month, so I want to raise awareness for a disease that affects an estimated 1.4 million people in the United States. Lewy Body dementia is under-recognized, under-diagnosed, and under-treated.

According to the Lewy Body Dementia Association, LBD is the second most common but the most common misdiagnosed form of dementia. Lewy Body dementia, which is an umbrella term for two related diagnoses: Parkinson’s disease dementia and dementia with Lewy Bodies. The earliest symptoms of these two diseases differ, but reflect the same underlying biological changes in the brain; eventually people with both diagnoses will develop very similar cognitive, physical, sleep and behavioral symptoms. General symptoms include:

• Changes in thinking and reasoning
• Difficulty with complex tasks like grocery shopping
• Confusion and alertness that can vary significantly from one hour or day to the next
• Hallucinations and delusions
• Difficulty navigating or perceiving distances
• Memory loss, though not as apparent in those with Alzheimer's

Although never given a diagnosis while he was alive, Robin Williams had almost all of the signs of LBD. His wife, Susan Schneider Williams, penned a powerful letter to the American Academy of Neurology about their struggles. You can read my blog on her powerful words here.

To complicate matters, some people have mixed dementia, namely, changes in the brain resulting from two or three of the following sub-types: Alzheimer's disease, vascular dementia or LBD. You can learn more about these forms of dementia here.  Given the many types of dementia, I encourage you to advocate for the best diagnostic work-up possible and ask for a referral to a neurologist who specializes in dementia. Even a primary care physician with the best of intentions may not be well informed about LBD, let alone less common forms of dementia. Educate yourself and use resources like the Lewy Body Dementia Association or the Alzheimer’s Association for help when needed.