Every 3 years, a national research summit is held to update research strategies for non-Alzheimer’s dementias. This 2-day national event is one of 3 rotating summits held in response to the National Alzheimer’s Plan, which also includes the related dementias.

The newly-published report from the Alzheimer’s Disease‐Related Dementias (ADRD) Summit 2019 provides recommendations to advance the study of LBD, frontotemporal, vascular and mixed dementias. Each session included three main topics: updates on research progress since the last summit, new draft research recommendations, and time for public comment from summit attendees.

The LBD session was co-chaired by two long-time members of LBDA’s Scientific Advisory Council, Bradley Boeve, MD of Mayo Clinic and Carol Lippa, MD of Thomas Jefferson University. Numerous members of LBDA’s Scientific Advisory Council and Angela Taylor, LBDA’s Senior Director of Research and Advocacy, served on the committee.

Other sessions included a focus on improving dementia nomenclature, research in communities affected by health disparities, and evolving science in the link between traumatic brain injury and dementia, and a brain pathology called TDP-43.

The Dementia Nomenclature session was co-chaired by LBDA’s Angela Taylor and Ronald Petersen, MD, PhD of Mayo Clinic. The committee included a diverse group of researchers, clinicians, people with dementia and family caregivers, as well as representatives from nonprofits, federal agencies and pharmaceutical companies.

This report will be presented to the National Institute of Neurological Disorders and Stroke for approval, and then proceed to the Department of Health and Human Services (DHHS) National Alzheimer’s Project Act (NAPA) Council. Ultimately, approved recommendations help guide the funding of research by the National Institutes of Health.