ATLANTA, GEORGIA - Nearly 80% of people with LBD received a diagnosis for a different cognitive, movement or psychiatric disorder before ultimately learning they had Lewy body dementia (LBD), according to the Lewy Body Dementia Association's groundbreaking report, Caregiver Burden in Lewy Body Dementias. 50% of the time, the original diagnosis was Alzheimer's. LBD, the second-most common form of degenerative dementia in the elderly affecting an estimated 1.3 million people in the United States, is most often misdiagnosed as Alzheimer's disease.
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Diagnosis BarriersThis eye-opening report reveals people with LBD and their caregivers face barriers to obtaining an early LBD diagnosis. Half of people seeking a diagnosis for LBD symptoms saw three or more doctors for 10 visits over the course of a year before they were diagnosed with LBD, and diagnosis required more than two years from the onset of symptoms for 31% of cases. Additionally, caregivers experience moderate to severe emotional burden, and most experience a sense of isolation because so few people know about LBD.
The findings are based on data collected by the Lewy Body Dementia Association (LBDA) in an online survey of 962 LBD caregivers. Designed by Steven H. Zarit, PhD, an expert on caregiver burden in dementia and Professor of Human Development at Penn State University, the survey was conducted over a 6-month period. Dr. James E. Galvin, a member of LBDA's Scientific Advisory Council and Professor of Neurology and Psychiatry at New York University, analyzed the survey data, which was published in the July, 2010 issue of Parkinsonism & Related Disorders and the April-June, 2010 issue of Alzheimer Disease & Associated Disorders.
Symptoms of LBDSymptoms of LBD include dementia, unpredictable variations in cognition, attention or alertness, hallucinations, Parkinson's-like symptoms, a sleep disorder characterized by physically acting out vivid nightmares and dreams, and a potentially life-threatening sensitivity to certain medications. Changes in mood and dysfunction of the autonomic nervous system are also common in LBD. The combination of cognitive, motor and behavioral symptoms creates a highly challenging set of demands for continuing care.
LBD is an umbrella term, because LBD has several clinical presentations. Some individuals will start out with a movement disorder leading to the diagnosis of Parkinson's disease and later develop dementia. Another group of individuals will start out with a memory disorder that may look like Alzheimer's disease, but over time two or more distinctive features become apparent leading to the diagnosis of 'dementia with Lewy bodies' (DLB). Lastly, a small group will first present with neuropsychiatric symptoms, which can include hallucinations, behavioral problems, and difficulty with complex mental activities, also leading to an initial diagnosis of DLB. Regardless of the initial symptom, over time all three presentations of LBD will develop very similar cognitive, physical, sleep and behavioral features, all caused by the presence of Lewy bodies throughout the brain.
Inadequate Discussion, Lack of InfoLBD caregivers rated specialists and general practitioners as inadequate in discussing disease progression. "The lack of information on disease progression is a serious challenge to LBD families," stated Angela Herron, President of LBDA's board of directors. "It's essential that families plan in advance for the relentless progression of LBD, and not having answers on what that decline will look like or how fast it may occur, adds significant stress and burden to an already difficult situation."
Kathy Fowler struggled for 5 years to get a diagnosis for her husband Philip's symptoms. After his quadruple by-pass in 2003, Philip's recovery was taking a longer time than expected. Not so much physically but cognitively and emotionally. "Why was he behaving so bizarrely?" Kathy asked professional after professional. "He's not quite right," she would tell them. She remembers his cardiologist leaning cavalierly in the office doorway, saying , "Yeah, that happens sometimes." Disheartened, she kept up appearances for friends and family, but privately accused her husband of drinking or taking drugs. She didn't know that LBD, a common form of dementia she'd never heard of, was robbing him of his mind.