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Alzheimer's, Dementia & Mental Health

Dementia Symptoms May Not Be Alzheimer’s; Caregivers Unmask Lewy Body Dementia

The number two dementia often identified too late for thousands of seniors - see video by Whoopi Goldberg in story

Whoopi Goldberg volunteers to make video to spread the word about Lewy Body Dementia. (see video below)

March 17, 2014 – “You don’t even know the battle is upon you, until the invasion is well underway,” says Ms. J, a caregiver for a person with dementia. Ms. J is just one of many caregivers who learn that debilitating symptoms begin to take their toll on loved ones before they even discover their diagnosis. It’s Lewy body dementia (LBD), the second most common form of progressive dementia that affects 1.3 million Americans, primarily seniors.

More than 5 million Americans suffer from Alzheimer’s disease, the most common form of degenerative dementia. Many will discover, however, it’s not Alzheimer’s that impairs their function, according to the Lewy Body Dementia Association.

“Early and accurate diagnosis is critical,” says Angela Taylor, director of programs, Lewy Body Dementia Association. “In fact, it may be life-saving.”

Taylor warns, “Unlike Alzheimer’s disease, people with undiagnosed LBD may be exposed to medications that can be very harmful to them. Misdiagnosis or lack of diagnosis also delays comprehensive symptom management that could improve their quality of life.”

Understanding LBD

LBD is associated with abnormal protein deposits in the brain, called Lewy bodies, and affects thinking, movement, behavior and mood. It’s difficult to diagnose LBD, because its early symptoms resemble symptoms found in Alzheimer’s and Parkinson’s disease.


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Lewy body dementia, a complex but surprisingly common brain disease, refers to two related diagnoses: Parkinson’s disease dementia (PDD) and dementia with Lewy bodies (DLB). The difference is in the presentation of two symptoms based on the “one-year rule.” With DLB, cognitive symptoms that interfere with daily living appear before or within a year of symptoms resembling Parkinson’s. With PDD, dementia does not develop until at least a year after movement problems begin.

New Book with Sketches of LBD Patients

Taylor adds, “We’re helping healthcare practitioners and LBD families with information and resources. We collaborated with the National Institutes of Health (NIH) on a new, comprehensive downloadable booklet, which includes a series of ‘Caregiver Sketches’ that highlight the experiences of others to unveil the shroud around LBD. It helps people to compare notes, and it encourages them to seek help… and that’s why we’re here.”

Not-so-sweet dreams

In his mid-sixties, Bruce started having some mild confusion and vivid dreams that he physically acted out by thrashing around and even falling out of bed. His neurologist diagnosed REM sleep behavior disorder and mild cognitive changes. Two years later, Bruce’s confusion had progressed to dementia. He was no longer able to live alone in his own home. His neurologist referred him for neuropsychological testing and, based on the results, changed his diagnosis to dementia with Lewy bodies.

What’s going on?

Janet, a 60-year old executive secretary, began having trouble managing the account, paperwork, and other responsibilities of her job. She became increasingly irritable, and her daughter insisted she see a doctor. Janet was diagnosed with depression and stress-related problems. Her doctor prescribed an antidepressant, but her thinking and concentration problems worsened.

When she could no longer function at work, her doctor diagnosed Alzheimer’s disease. A few months later, Janet developed a tremor in her right hand. She was referred to a neurologist, who finally diagnosed Lewy body dementia.

Trouble with balance

After major surgery at age 69, Cliff developed balance problems, and later his movements became stiff. Within a year, Cliff started having hallucinations and troubling side effects from antipsychotic medications. After an initial diagnosis of parkinsonism, he soon developed cognitive problems and was diagnosed with Lewy body dementia.

Cliff’s balance problems increased, and many falls prompted physical and occupational therapy, where he learned to use adaptive devices and techniques. Cliff’s wife, Kathy, discovered that putting his shoes on before getting him up helped improve his balance. The doctor prescribed a low dose of medication for parkinsonism, which also helped.

Sleep and dementia

Lee started having bad nightmares in his late sixties. Later, he had problems communicating and would sit for long periods of time staring out the window. His sleep problems worsened and, by age 73, were one of the most difficult symptoms of LBD. While asleep, Lee talked and his limbs jerked—he thought his dreams were real. Upon waking, he thought he had been at work or out with friends. Medications prescribed for dementia and sleep issues helped both Lee and his wife get more rest.

The Lewy Body Dementia Association (LBDA) is  dedicated to raising awareness of Lewy body dementias (LBD), supporting people with LBD, their families and caregivers, and promoting scientific advances. LBD. To learn more about LBD and LBDA, visit

The Basics of Lewy Body Dementia

LBD is a disease associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, affect chemicals in the brain whose changes, in turn, can lead to problems with thinking, movement, behavior, and mood. LBD is one of the most common causes of dementia, after Alzheimer’s disease and vascular disease.

Dementia is a severe loss of thinking abilities that interferes with a person’s capacity to perform daily activities such as household tasks, personal care, and handling finances. Dementia has many possible causes, including stroke, tumor, depression, and vitamin deficiency, as well as disorders such as LBD, Parkinson’s, and Alzheimer’s.

Diagnosing LBD can be challenging for a number of reasons. Early LBD symptoms are often confused with similar symptoms found in brain diseases like Alzheimer’s. Also, LBD can occur alone or along with Alzheimer’s or Parkinson’s disease.

There are two types of LBD—dementia with Lewy bodies and Parkinson’s disease dementia. The earliest signs of these two diseases differ but reflect the same biological changes in the brain. Over time, people with dementia with Lewy bodies or Parkinson’s disease dementia may develop similar symptoms.

Who Is Affected by LBD?

LBD affects an estimated 1.3 million individuals in the United States and accounts for up to 20 percent of people with dementia worldwide. LBD typically begins at age 50 or older, although sometimes younger people have it. LBD appears to affect slightly more men than women.

LBD is a progressive disease, meaning symptoms start slowly and worsen over time. The disease lasts an average of 5 to 7 years from the time of diagnosis to death, but the time span can range from 2 to 20 years. How quickly symptoms develop and change varies greatly from person to person, depending on overall health, age, and severity of symptoms.

In the early stage of LBD, usually before a diagnosis is made, symptoms can be mild, and people can function fairly normally. As the disease advances, people with LBD require more and more help due to a decline in thinking and movement abilities. In the late stage of the disease, they may depend entirely on others for assistance and care.

Some LBD symptoms may respond to treatment for a period of time. Currently, there is no cure for the disease. Research is improving our understanding of this challenging condition, and advances in science may one day lead to better diagnosis, improved care, and new treatments.

Lewy Body Dementia: Information for Patients, Families, and Professionals

By National Institute on Aging

Click here to download the Diagnostic Symptoms Checklist
This checklist is specifically designed to aid in reporting those symptoms which are involved in diagnosing dementia with Lewy bodies (DLB), the most undiagnosed form of Lewy body dementia.

Click here to download the Comprehensive LBD Symptoms Checklist
This expanded checklist includes both symptoms required for the diagnosis of LBD and many other symptoms common in LBD that may appear as the disease progresses.

Lewy Body Dementia Association

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