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What is Lewy Body Dementia?

Young man showing care and concern to elderly man

More than one million people in the U.S. are coping with Lewy Body dementia (LBD). Lewy bodies are abnormal deposits of a protein called alpha-synuclein in the brain. Lewy bodies impact thinking, movement, behavior, mood, and sleep. As with other forms of dementia, risk increases with age.

Also like other forms of dementia, dementia with Lewy bodies is a progressive illness with no cure. “How quickly symptoms develop and change varies greatly from person to person, depending on overall health, age, and severity of symptoms,” says the National Institute on Aging (NIA). Overall, however, progression tends to be rapid, says Steven Posar, MD, CEO and Founder of GuideStar Eldercare.

Symptoms of Lewy body dementia

Cognitive symptoms include an inability to concentrate, pay attention, or stay alert. Individuals may also express ideas that are illogical, disorganized, or unclear. Poor judgment, disorientation, or difficulty using numbers and language may also occur.

Visual hallucinations affect about 4 out of 5 people with Lewy body dementia, often early in the course of the illness.

A change in handwriting, such as a shift to smaller writing, can sometimes emerge as an early movement change that is characteristic of Lewy body dementia.  Other movement-related symptoms may include: muscle rigidity, a shuffling walk, tremor, balance problems, frequent falls, stooped posture, loss of coordination, reduced facial expression, difficulty swallowing, or a weak voice, according to NIA.

Sleep disorders, such as insomnia and daytime sleepiness, are common. Some patients also experience REM sleep behavior disorder, in which they scream, flail, punch, or have other movements during REM sleep, acting out their dreams.

Depression, apathy, and anxiety are common mood changes in Lewy body dementia. Anxiety may present as “asking the same questions over and over or being angry or fearful when a loved one is not present,” according to NIA. Delusions or paranoia may also occur.

Agitated behavior or restlessness may be observable as “pacing, hand-wringing, an inability to get settled, constant repeating of words or phrases, or irritability,” says NIA.

Because of Lewy body dementia’s impact on the autonomic nervous system, some patients may experience swings in body temperature or blood pressure, dizziness, fainting, frequent falls, or incontinence.

Lewy bodies and Parkinson’s disease

Lewy bodies are also present in Parkinson’s disease. They are responsible for movement disorders in both Parkinson’s and Lewy body dementia. However, the conditions are not identical. In fact, not all individuals with Parkinson’s disease develop dementia.

Both conditions are characterized by depletion of neurotransmitters due to the neurological changes imposed by Lewy bodies, explains Johns Hopkins.  Interference with dopamine metabolism leads to reduced levels, causing movement symptoms. Interference with acetylcholine levels is behind dementia systems, they explain. In this respect, the two conditions have a common root. “Patients with dementia with Lewy bodies and Parkinson disease dementia share the same dopaminergic and cholinergic deficit profile in the brain and seem to represent 2 sides of the same coin in a continuum of Lewy body diseases,” write Klein et al. in Neurology.

Diagnosing dementia with Lewy bodies

Differential diagnosis of dementia symptoms can be vexing and is best performed by a skilled neurologist with specialized expertise in gerontology. Steven Posar, MD points out that Lewy body dementia is often misdiagnosed because some symptoms overlap with other forms of dementia. Hallmarks of Lewy body dementia, he says, “include rapid progression, significant sleep disturbances early in the condition, movement disorders, irritability, and psychosis early in the condition.” (For further explanation, listen to the presentation, Neurologic Versus Psychiatric Diagnoses in Dementia.)

Diagnosis drives treatment, so completing a comprehensive neurobehavioral assessment can help improve outcomes for nursing home residents. Notes Dr. Posar, agitation can be addressed by medications such as acetyl cholinesterase inhibitors. However, many medications behave uniquely in the presence of disturbed neurotransmitter levels and must be finely tuned and monitored to optimize a patient’s well-being.

For example, carbidopa-levodopa given for movement symptoms can exacerbate psychosis. This is one of the reasons GuideStar Eldercare defines a role for specialized nurse practitioners on its clinical care teams. These experts are trained to manage medications for patients with Lewy body dementia and other neuropsychiatric illnesses, applying clinical expertise and experience for optimal outcomes.

The value of person-centered care

The specialized expertise of a neurologist is crucial in formulating an effective care plan, says NIA, which advocates for interdisciplinary teams. “A skilled care team often can suggest ways to improve quality of life for both people with LBD and their caregivers,” they add.

Delivering effective, person-centered care for someone with Lewy body dementia begins with accurate diagnosis rooted in neurology. With focused care and expert monitoring, it is possible to reduce suffering with Lewy body dementia while actively promoting patients’ safety, functionality, and dignity.