ATLANTA - 09/28/2016 - The Lewy Body Dementia Association (LBDA) announced a new white paper that explores the state of the science for the most misdiagnosed form of dementia. The white paper was developed to create an awareness that there are increasing research opportunities to gain critical insights into LBD. Lewy body dementia is now recognized to be among the top three causes of dementia in the U.S.

LBD is characterized by an abnormal build-up of Lewy bodies, which are protein deposits in the brain cells that regulate behavior, memory, movement, and personality. It impairs thinking, movement, sleep, and behavior—causing hallucinations or acting out dreams. LBD also affects blood pressure control, temperature regulation, digestion, and other autonomic body functions. While there is currently no cure, recognizing symptoms early can help ensure quicker, appropriate treatment and caregiver support.

Research (and its funding) has lagged far behind Alzheimer’s disease (AD) and other common age-related dementias. As a result, progress has been relatively slow to date in unraveling the biological causes of LBD and improving our ability to diagnose and treat the disorder. The inclusion of Lewy body dementia under the National Plan to Address Alzheimer’s Disease is driving increased funding into this underserved disease.

Both diagnoses under the LBD umbrella, dementia with Lewy bodies(DLB) and Parkinson’s disease dementia(PDD), are very under-studied, in comparison to AD. While there are relatively well-funded research programs for Parkinson’s disease, and thus cognition in PD, in contrast, systematic study of DLB has been very difficult.

In part, this is due to people with DLB being difficult to diagnosis as they may not show typical symptoms other than dementia early in the course of the disease (e.g., motor symptoms of parkinsonism, visual hallucinations) and thus their cognitive impairment may be wrongly attributed to AD. Significantly, this led to essentially no large-scale studies of DLB, a lack of research funding focused on DLB, and as a result, the field is hindered by substantial research gaps.

“We know how important LBD research is to the LBD families we support, and we at the Lewy Body Dementia Association are thrilled about the gains made in LBD research and advocacy in the last 5 years. Therefore, we published, “Lewy Body Dementia: The State of the Science,” to update and inform our community with the major findings to date in LBD research. “said Mike Koehler, CEO, of LBDA.

While this paper does not purport to be an exhaustive, scientifically detailed review of the field, it highlights the vast array of opportunities driving research progress.

For more information and to download the entire white paper read more here or visit

About Lewy Body Dementia Association

The Lewy Body Dementia Association (LBDA) is a 501(c)(3) nonprofit organization dedicated to raising awareness of Lewy body dementias (LBD).  Because of its complexity, LBD dramatically affects both the person diagnosed and their primary, family caregiver.  A national health organization, LBDA supports all those affected by Lewy body dementias through outreach, education, and research.