Focus On Lewy Body Dementia (LBD) Research

Close up of light blue neurone. Lewy Body Dementia banner image.

NINDS Program Description

An estimated 1.3 million Americans have Lewy Body Dementia (LBD), which features progressive dementia plus varying combinations of symptoms, ranging from fluctuating cognition and visual hallucinations, to mood disorders and autonomic dysfunction. Lewy body dementia is a disease associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, affect chemicals in the brain whose changes, in turn, can lead to problems with thinking, movement, behavior, and mood. Lewy body disease has been discovered to be a common cause for clinical dementia. It encompases dementia with Lewy bodeis (DBL) and Parkinson’s disease dementia (PDD). The generic term “Lewy body dementia” encompasses both entities. Diagnosing LBD can be challenging for a number of reasons. Early LBD symptoms are often confused with similar symptoms found in other brain diseases like Alzheimer’s. Also, LBD can occur alone or along with Alzheimer’s or Parkinson’s diseaseIn the 2017 FY, NIH invested roughly $31 million into LBD research

  • More than 1 million individuals in the U.S. have LBD
  • Characterized by Lewy bodies – clumps of alpha-synuclein protein – which are a pathological hallmark of Parkinson’s disease
  • Problems with thinking, movement, behavior, and sleep

Estimates of Funding for Various Research, Condition, and Disease Categories

Research/Disease Areas* FY 2016
(Actual)
FY 2017
(Actual)
FY 2018
Estimated
(Enacted)
FY 2019
Estimated
Lewy Body Dementia $22 $31 $33 $31

*Dollars in millions and rounded

Proceedings & Outcomes

LBD and the National Plan to Address Alzheimer’s Disease

On January 4, 2011, the National Alzheimer's Project Act (NAPA) was signed into law. The Act defines "Alzheimer's" as Alzheimer's disease and related dementias (AD/ADRD), which includes frontotemporal degeneration (FTD), Lewy body dementia (LBD), vascular contributions to cognitive impairment/dementia (VCID), and mixed etiology dementias (MED).

ADRD 2016 Summit Overview for LBD

The 2016 Alzheimer’s Disease-Related Dementias (ADRD) Summit was hosted by the National Institute of Neurological Disorders and Stroke (NINDS) in collaboration with the National Institute on Aging (NIA). The 2016 ADRD Summit was mandated by the National Plan to address Alzheimer’s Disease as a follow-up to the 2013 ADRD Summit. The Summit set research priorities (36 KB) for LBD research, including:

Establish Longitudinal Diverse Cohorts with Common Measures, Culminating in Autopsy

1. Initiate clinical trials for LBD in diverse populations using therapies that address symptoms that have the greatest impact on patient function and caregiver burden.

2. Create longitudinal clinical, biological, and imaging resources to improve detection and diagnosis of DLB at the pre-dementia or prodromal stage including high risk PD patients.

Discover Disease Mechanisms Through Brain Mapping and Genetics

3. Characterize nervous system changes in LBD cohorts that have come to autopsy to identify disease-specific underlying mechanisms to guide biomarker and therapeutic approaches.

4. Identify novel common and rare genetic variants, epigenetic changes, and environmental influences that impact the risk for and clinical features of LBD.

Develop and Validate Biological and Imaging Biomarkers

5. Develop and validate imaging approaches to enhance the differential diagnostic accuracy of LBD, detect latent and prodromal LBD, and monitor disease progression in natural history and treatment studies.

6. Develop biomarkers for pathologic changes, disease progression, and diagnosis. Incorporate markers for diagnosis of latent or prodromal disease and for monitoring therapeutic responsiveness.

Model Disease Processes to Develop Potential Symptomatic and Disease Modifying Therapies

7. Develop LBD animal, cellular, and in vitro models that recapitulate key features, including clinical pathophysiologic heterogeneity to identify mechanistic candidates for interventions.

8. Develop disease-modifying interventions for LBD based on discovering biomarkers, molecular targets, and genetic and environmental modifiers that enhance, delay or prevent the onset of disease.

Resources and Tools

An informational booklet about Lewy Body Dementia compiled by the National Institute of Neurological Disorders and Stroke (NINDS).