Resources
For Individuals and Care Partner
Is it Lewy?: An overview of LBD including the difference in symptoms between Alzheimer's disease and Parkinson's disease.
Facing LBD Together: Designed for those newly diagnosed, their family members and care partners, this booklet provides an overview of LBD and its symptoms.
Lewy Who?: An educational resource that provides an overview of Lewy body dementia and two related clinical diagnoses - dementia with Lewy bodies (DLB) and Parkinson's disease dementia (PDD)
Comprehensive Symptoms Checklist: A helpful checklist for those living with Lewy and their healthcare professionals identify and track symptoms.
"I have LBD card" Awareness Cards: With options for individuals living with Lewy and for care partners, carry "awareness" cards with you when navigating public settings. These cards can be useful in helping those you encounter understand that you may need extra patience and support due to changes in thinking, movement and speech. Download and print at home at your convenience.
Lewy body dementia: Information for Patients, Families and Professionals: This booklet, developed in collaboration between the Lewy Body Dementia Association, the Shiley-Marcos Alzheimer's Disease Research Center at the University of California, San Diego, the National Institute on Aging and National Institute of Neurological Disorders and Stroke, explains the different forms of LBD, symptom management and offers practical advice for those living with Lewy and their care partners. Print copies of this publication can be ordered online from the National Institute on Aging's Alzheimer's Disease Education and Referral Center or by calling toll-free 1-800-438-4380.
Medical Alert Wallet Card: An easy to carry resource to quickly inform Emergency Room medical professionals of important medication sensitivities in LBD.
Seeing Through Lewy – Understanding and Managing Visual Changes in LBD: LBD affects not only memory and movement but also how the brain processes visual information. From difficulty finding everyday items to navigating spaces safely, visual changes can impact independence, safety, and quality of life. This booklet explains the neurological basis of these changes and offers clear, actionable suggestions to help.
The Lewy Trial Tracker makes it easy for you to keep up with and participate in the latest LBD research. It's an ongoing, single source of information on LBD-related clinical trials and studies that highlights study topics, procedures, locations, and study site contact information.
LBDA's Lewy Learning Center is a platform for free, on-demand learning and continued education on LBD. Courses are available to watch at any time with unlimited viewing options.
Visit LBDAtv to explore our Community Webinar Series, designed to provide you with strategies for self-advocacy, exploration of the complex symptoms of LBD, and skills and resources to enhance your quality of life.
SPARK: Robin Williams and His Battle with Lewy body dementia with its raw and honest story as told by Susan Schneider Williams, wife of actor and comedian Robin Williams, reveals the struggles faced by those with this disease. Watch for free on LBDA's Mediflix Channel.
For Clinical Researchers and Healthcare Professionals
The U.S. Based DIAMOND Lewy™ Management Toolkit: Originally developed in the UK for dissemination via the National Health Service, the U.S. Based Diamond Lewy™ Management Toolkit provides a comprehensive overview of the management of the complex symptoms of Lewy body dementia: sleep, cognition, psychiatric symptoms, autonomic features and motor symptoms.
Lewy body dementia Online Course: The Mayo Clinic School of Continuous Professional Development and LBDA have collaborated on a CME online course which provides a basic introduction to LBD, its symptoms, and diagnostic and management tools combined with a glimpse into emerging therapies in the pipeline and how we can advance biomarkers for use in the clinic.
Lewy Learning Center offers free, on-demand professional education curriculum designed for clinicians and health care professionals to support client centered care for people living with LBD. Course topics, developed with guidance from LBDA's Scientific Advisory Council, focus on deepening your understanding of the complex symptoms of LBD, providing resources and tools you need to better manage your patient's symptoms and help them achieve a better quality of life.
LBDA's VuMedi Channel: A free, on-demand education platform exclusively for physicians and healthcare professionals offering a curated selection of webinars from LBDA's Community Webinar Series.
LBDA Research Centers of Excellence: A collaborative clinical research network complete with a Coordinating Center and over 27 academic research centers at major universities throughout the U.S., the LBDA Research Centers of Excellence (RCOE) program aims to increase access to LBD clinical care expertise and establish a clinical trials-ready network of nationally recognized LBD research centers.
Lewy body dementia: Information for Patients, Families and Professionals: This booklet, developed in collaboration between the Lewy Body Dementia Association, the Shiley-Marcos Alzheimer's Disease Research Center at the University of California, San Diego, the National Institute on Aging and National Institute of Neurological Disorders and Stroke, explains the different forms of LBD, symptom management and offers practical advice for those living with Lewy and their care partners. Print copies of this publication can be ordered online from the National Institute on Aging's Alzheimer's Disease Education and Referral Center or by calling toll-free 1-800-438-4380.
Externally-Led Patient-Focused Drug Development meeting on Dementia with Lewy Bodies
In October 2024, LBDA in collaboration with the Alzheimer's Association hosted the first-ever Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting on dementia with Lewy bodies (DLB). The EL-PFDD is a unique opportunity for the FDA, drug developers and other key stakeholders to hear directly from people living with a disease and their care partners. This meeting focused on insights from people living with DLB and current or former care partners in two sessions: DLB Symptoms & Daily Impacts and Current & Future DLB Treatments.
