Delayed Diagnosis and Caregiver Emotional Burden Common in Lewy Body Dementias


ATLANTA, GEORGIA - September 14, 2010 - 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 new report, Caregiver Burden in Lewy Body Dementias. 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.

This new 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 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.

LBD 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.

Although prognosis varies among individuals, LBD is often a more rapidly progressive disease than Alzheimer's disease, and early diagnosis provides families an opportunity to plan for expected decline in cognition, function and behavior. Unlike other dementias, people with LBD are exquisitely sensitive to certain medications, making early diagnosis a critical component to minimizing exposure to medications that may aggravate symptoms, such as antipsychotic medications. Nearly 60% of people with LBD may experience severe, potentially irreversible reactions to antipsychotic medications, and in rare cases, a life threatening condition called neuroleptic malignant syndrome may also occur. Given the evidence that suggests treatment with cholinesterase inhibitors may benefit patients with LBD more than those with Alzheimer's disease, barriers to diagnosis have a negative impact on both the LBD patients' and caregivers' quality of life.

LBD caregivers face a number of challenges: social, medical, functional and financial. LBD caregivers feel particularly isolated and often have to respond to crises, but may not be receiving adequate support from family, friends or healthcare providers because of the lack of LBD public awareness. These features have the potential to lead to adverse outcomes for LBD family caregivers, including "burnout", stress, depression and poor health.

"Poorer LBD caregiver outcomes directly lead to increases in patient institutionalization and declines in quality of life, stated Dr. Galvin. "This may be particularly important in LBD where patients are at an increased risk of institutionalization and mortality."

The Lewy Body Dementia Association's report, Caregiver Burden in Lewy Body Dementias, can be downloaded by visiting

The Lewy Body Dementia Association

The Lewy Body Dementia Association (LBDA) is the leading voluntary health organization in raising awareness of Lewy body dementias (LBD), supporting patients, their families and caregivers, and promoting scientific advances. LBDA's Scientific Advisory Council is comprised of leading experts from the United States, the United Kingdom, and Japan in research and clinical management of Lewy body dementias. To learn more about LBDA, visit

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