“Norma Loeb is one of the most knowledgeable people about LBD you will find who is not a doctor. And, her energy and commitment should be bottled—the world could really use it!”
– Susan Schneider Williams (wife of Robin Williams)
We have the only live Helpline for LBD in the United States. Please call:
Worldwide Directory of MOVEMENT DISORDERS SPECIALISTS
The most requested resource of LBD families is finding physicians who can help with diagnosis and treatment. This WORLDWIDE Directory of Movement Disorder Specialists, made available by the International Parkinson and Movement Disorder Society, can make that search much easier:
Welcome to our site
Lewy body dementia (LBD) is the second most common form of progressive dementia, affecting more than 1.4 million Americans. Because LBD comes with a host of physical, cognitive and behavioral symptoms, it often mimics Alzheimer’s disease, Parkinson’s disease or a psychiatric disorder. As a result, it is widely misdiagnosed. Even as diagnoses increase, resources for people with LBD and their families still remain extremely limited. Citing this lack of resources and assistance, the Lewy Body Dementia Resource Center was founded to provide much needed services and support for people with LBD and their loved ones.
“I am so thankful to you and the Lewy Body Dementia Resource Center. I never felt alone. I never felt misled. And I never felt I didn’t have the tools or the knowledge. I then was able to help others around me to understand and felt comfortable with my decisions.” – Paola S.
“I wanted to express my gratitude for your endless fight for LBD patients and caregivers. The resources you provide have been invaluable to me as I cared for my husband.” – Nancy D.
LBDRC’s mission is to raise much-needed awareness of LBD through the dissemination of information to health care professionals and the general public, while offering loving support and services to people with LBD and their care partners. By promoting these efforts, as well as early detection and diagnosis, we aim to help those living with LBD and their families find the quality support they desperately need while advocating for increased funding and research. A large part of our mission will focus on outreach and speaking engagements in order to educate the healthcare community and the public on this little known disease. This enables better quality of life for those with LBD, their caregivers and their loved ones.
Key to the essence of LBDRC is a sense of community for those affected by LBD. Here you’ll find essential information, recommendations and resources to help you manage LBD and its impact on day-to-day life. Through comprehensive resources and personal insights from others who have experienced LBD first-hand, you’ll find the understanding you need to cope with this disease, along with the love, support and know-how to help you and your family through the twists and turns that may lay ahead. LBDRC is headed by a team familiar with the impacts of LBD. We have all been care partners to people living with this disease. Our board includes experts in the field as well as those who have been personally impacted by LBD.
The Lewy Body Dementia Resource Center was formed for the purpose of raising crucial awareness of Lewy body dementia (LBD) and to offer urgently needed help in New York for the many families who have lacked the services they need primarily because people do not know of the disease.