"You don't even know the battle is upon you, until the invasion is well underway," says Ms. J, 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. More than 5 million Americans suffer from Alzheimer's disease, the most common form of degenerative dementia.
Parkinson's disease, a movement disorder, affects 1 million Americans. However, many will discover it's not Alzheimer's or Parkinson's disease at all that impairs function. It's Lewy body dementia (LBD), the second most common form of progressive dementia after Alzheimer's disease. The most misdiagnosed dementia, LBD affects 1.3 million Americans.
"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."
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."
Caregiver Sketches of LBD
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.
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. 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.
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