LBDA

LBDA Responds to Ted Turner’s Diagnosis of Lewy Body Dementia

Lewy Body Dementia is a Life-Shortening, Terminal Diagnosis

ATLANTA, Oct. 2, 2018 – It was with great sadness that the Lewy Body Dementia Association (LBDA) learned of Ted Turner’s diagnosis of Lewy body dementia (LBD). Mr. Turner's announcement highlights the growing tide of diagnoses of this confusing but common, and relentlessly progressive, disorder. Ted Turner announced he had Lewy Body Dementia in an interview that aired on Sunday.

Despite being the second most-common form of progressive dementia, LBD is not yet a household term. Symptoms of LBD include declining thinking skills, plus individualized combinations and severities of other LBD symptoms, including visual hallucinations, frequent, unpredictable changes in thinking skills, attenting and wakefulness, changes in movement resembling Parkinson's disease, a sleep disorder in which a person physically acts out dreams, and changes in certain automatically-regulated functions like blood pressure and temperature regulation.

The Lewy Body Dementia Association (LBDA) offers five essential facts the public should know about LBD:

1.      LBD is a relentlessly progressive disorder affecting thinking, movement, behavior and sleep. On average people with LBD live 5-7 years after diagnosis, though it can progress as quickly as 2 years or as slowly as 20 years.
2.      Despite its low public awareness, LBD is not a rare disorder and affects an estimated 1.4 million Americans along with their families and caregivers.
3.      People living with LBD and their caregivers need a high level of support from family members and healthcare professionals from the early stage of the disorder, due to early and unpredictable frequent changes in thinking, attention and alertness, as well as psychiatric symptoms like hallucinations and delusions.
4.      LBD is the most misdiagnosed form of dementia. Getting a diagnosis of LBD typically takes 3 or more doctors over 12 to 18 months. The LBDA Research Centers of Excellence network includes 25 preeminent academic centers with expertise in LBD diagnosis and management.
5.      Early diagnosis of LBD is extremely important, due to severe sensitivities to certain medications sometimes used i disorders that mimic LBD, such as Alzheimer's disease and other medical and psychiatric illnesses. An early diagnosis also empowers the person with LBD to review, pursue and fulfill their personal life priorities before the illness progresses too far, review their legal and financial plans, and discuss their care preferences with their physician and family.

Without greater public awareness about this devastating condition, LBD will remain hidden in the shadows of more well-know neurological disorders such as Alzheimer's disease and Parkinson's disease. LBDA launched its annual awareness month campaign today. TH15 IS LEWY is a 'visual' online awareness campaign displaying all things related to Lewy body dementia, which also celebrates LBDA's 15 years of supporting the LBD community.

LBDA's Scientific Advisory Council includes prominent neurologists who are experts in LBD research and clinical care. Interviews and quotes can be made readily available upon request. Please contact Angela Taylor, Director of Programs at ataylor@lbda.org or 814-571-2778.
 
About the Lewy Body Dementia Association
The Lewy Body Dementia Association is the nation’s leading authority on Lewy body dementias (LBD) and is dedicated to continuous outreach, education, research, and support for those affected with LBD and their families. LBD is a progressive brain disease that affects thinking, movement, behavior, and impacts 1.4 million people in the United States.