Jan 28 is World Lewy Body Dementia Day! Your friendly reminder that Lewy body dementia (LBD) is an umbrella term including Parkinson’s disease dementia and dementia with Lewy bodies. So even if you’re not necessarily working on dementia, as Parkinson’s researchers you do work on the prodromal phase of Lewy body dementia! Jan 28 was chosen as it’s the birthday of neurologist and neuropathologist Dr. Fritz Jacob Heinrich Lewy (1885-1950) for whom the aggregations of misfolded alpha-synuclein proteins in the brain, now known as Lewy Bodies, were named.
Today is first and foremost about raising awareness, so educate yourselves and share with a loved one. It is the second most common neurodegenerative dementia with substantial clinical heterogeneity. Many people with Lewy body dementia don’t get diagnosed with it during life, and instead get a diagnosis of another type of dementia like Alzheimer’s (females particularly have a higher prevalence of misdiagnosis). Gold standard for diagnosis is pathology. Clinically, we rely on symptoms and examination. Biomarkers support a diagnosis but cannot make a diagnosis on their own. There is no disease modifying treatments available right now, but symptomatic treatments can help. Also, getting the correct diagnosis for people can help with future planning and protecting them from mistreatments, for instance typical antipsychotics (particularly haloperidol) should not be used in LBD and can lead to even death. Since Alzheimer’s & Lewy body pathologies like tagging along to one another + even for people with pure Lewy body pathology the phenotype may look like Alzheimer’s, there is a chance that people with LBD are mistakenly being recruited into Alzheimer’s trials and influencing the findings too. And since these pathologies can co-occur together, it shouldn’t be exclusionary. Seeing Alzheimer’s biomarkers in the cerebrospinal fluid shouldn’t make you think “ok they don’t have Lewy bodies” and having a positive skin biopsy for alpha synuclein shouldn’t make you think “ok they don’t have Alzheimer’s”.
Long story short, please tell someone about LBD at least today! We’ve really seen a lot of advances in Parkinson’s field with increased awareness and LBD including an advanced phase of Parkinson’s deserves to benefit from some advances too. If you’re looking for a casual podcast/video to check out while you’re on your way to work, working out, cooking, etc. we recently recorded something, feel free to check it out and share (first link for youtube video, second link for just the voice):
youtu.be/JTH-L3qPx5M
https://pod.fo/e/37f580
Also throwing in a quick read from NIH, they also have a booklet that can be shared with patients and caregivers as well:
https://www.alzheimers.gov/alzheimers-dementias/lewy-body-dementia
