ATLANTA (JUNE 18, 2014)—The sad news of Casey Kasem’s illness and passing has brought unexpected visibility to a disease unfamiliar to many people. The Lewy Body Dementia Association offers its condolences to the family and friends of Casey Kasem. Mr. Kasem had been suffering from Lewy body dementia (LBD), one of the most debilitating forms of dementia. LBD affects 1.3 million Americans.
Survival in LBD may be shorter than Alzheimer’s disease, with the average prognosis being 5 to 8 years, if a diagnosis is possible. Research on mortality in LBD showed that individuals with LBD were 2 times more likely to die at comparable ages than people with AD. The average survival time for LBD was 78 years of age and 85 years for those with AD. Men were 1.5 times more likely to die sooner than women. After diagnosis, people with LBD had an average survival of 7 years while individuals with AD lived 8.5 years.
“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 personalities like Kasem 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.”
Support for Physicians and Families
Education about LBD is urgently needed. The Lewy Body Dementia Association offers a range of information, resourcesand support, including a downloadable Diagnostic Checklistof LBD symptoms for individuals with LBD and caregiversto facilitate their discussions with their doctor. For hospital-based physicians, LBDA provides information and toolsabout emergency treatment of psychosis in LBD.
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), 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. A national health organization, 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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