“It's tragic when anyone develops a terrible, fatal disease,” says Dr. James E. Galvin, a professor of neurology at NYU Langone Medical Center and board member of the Lewy Body Dementia Association (LBDA). “But even attention that is drawn to diseases like LBD by athletes like Stan Mikita can lead to better understanding and more resources.”
A debilitating disease, Lewy body dementia impairs thinking, movement, sleep and behavior—causing people to see hallucinations or act out dreams. Also, it affects autonomic body functions, such as blood pressure control, temperature regulation, and digestion. Recognizing symptoms early can help a person with LBD get comprehensive and appropriate treatment and the caregiver get much needed support.
“Lewy body dementia (LBD) is the most misdiagnosed form of dementia,” says Michael Koehler, President of the Lewy Body Dementia Association. “It takes on average over 18 months and three doctor visits to receive a correct diagnosis of LBD.” Koehler adds most people are not diagnosed until at moderate or severe states of the disease.LBD afflicts Americans most often after the age of 50, and is the second most common cause of progressive dementia behind Alzheimer’s disease.
“The caregiver burden for LBD is very high,” says Dr. Galvin. “Therefore, if you or someone you know is seeking support in dealing with the care of a person with LBD or someone with LBD who has passed, the Lewy Body Dementia Association (LBDA) is here to help.”
About Lewy Body Dementia Association
The Lewy Body Dementia Association (LBDA) is nonprofit organization dedicated to raising awareness of Lewy body dementias (LBD), promoting scientific advances, and supporting people with LBD, their families and caregivers. LBD, a complex disease that can present with a range of physical, cognitive, and behavioral symptoms, is a “family disease.” It dramatically affects not only the person diagnosed but also the primary caregiver. The only national health organization dedicated to LBD, LBDA supports all those affected by Lewy body dementias through outreach, education and research. To learn more about LBD and LBDA, please visit www.lbda.org.
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