Dementia with Lewy bodies

Dementia with Lewy bodies is a form of atypical parkinsonism. People with DLB often have symptoms that are similar to Parkinson's disease, including:

• Slowed movements (bradykinesia)
• Stiffness (rigidity)
• Tremors

Other DLB symptoms affecting movement may include:

• Balance problems and frequent falling
• Decreased facial expression
• Difficulty swallowing (dysphagia)
• Loss of coordination
• Shuffling or freezing during walking
• Smaller handwriting than normal (micrographia)

A common feature of dementia with Lewy bodies is mental function that changes from day to day or even within the same day. People with DLB switch from moments of alertness and attention to periods of confusion and unresponsiveness.

DLB symptoms affecting cognition may include:

• Inability to perform two or more tasks at once
• Memory loss (usually later on in the disease process)
• Poor judgment and problems with decision-making
• Problems with planning, reasoning, and problem-solving
• Trouble focusing or staying awake
• Trouble with depth perception and hand-eye coordination
• Visual hallucinations (seeing things that are not really there) affect about 80 percent of people with DLB and often begin in the earlier stages of the disease

People with DLB commonly experience sleep disorders, including:

• Changes in sleep patterns
• Excessive daytime sleepiness or napping during the day
• Insomnia
• Rapid eye movement (REM) sleep behavior disorder
• Restless legs syndrome (RLS)
• Trouble telling dreams from reality after waking

People with DLB may experience changes in mood or behavior, including:

• Anxiety
• Delusions (false beliefs or opinions that the person believes are true but are not in reality)
• Depression
• Lack of interest in events or daily activities
• Paranoia
• Restlessness, irritability, agitation, or aggression
• Social withdrawal

Dysautonomia refers to problems affecting the autonomic nervous system (ANS), which controls processes in the body that are not under voluntary control. These processes include blood pressure, breathing, heart rate, digestion, and regulating internal body temperature.

Dysautonomia symptoms of dementia with Lewy bodies may include:

• Constipation
• Dizziness or fainting spells
• Increased sensitivity to heat and cold
• Large drops in blood pressure, especially with changes in position (orthostatic hypotension)
• Problems with bowel or bladder control (incontinence)
• Sexual dysfunction
• Trouble regulating body temperature

Medications can help reduce or control symptoms affecting your cognition, mood, movement, and sleep. Such medications may include:

• Cholinesterase inhibitors: Medications such as donepezil, galantamine, and rivastigmine increase levels of neurotransmitters in the brain that are important for alertness, thought, and memory. They ease cognitive problems experienced by some people with DLB.
• Anti-depressants: Medications such as selective serotonin reuptake inhibitors (SSRIs) are used to treat depression and mood swings.
• Carbidopa-levodopa: This drug works by increasing the levels of dopamine in the brain. It may help reduce Parkinson's-like symptoms in DLB, such as slowed movements, stiffness, or tremors.
• Clonazepam and melatonin: These medications treat REM sleep behavior disorder to improve sleep quality.
• Memantine: This medication decreases the chemical messenger glutamate in the brain. It specifically treats moderate-to-severe dementia.
• Pimavanserin: This medication is used to treat hallucinations and delusions for people with Parkinson's disease dementia. It may be helpful for people with DLB with these symptoms.

Rehabilitative therapies can help improve your quality of life, manage symptoms, and reduce complications. Your neurologist may recommend:

• Occupational therapy: Occupational therapists can help you find new and easier ways to perform daily tasks.
• Physical therapy: Physical therapists teach you exercises to improve balance, reduce fall risk, and keep you active.
• Psychotherapy: Psychotherapists can help you manage anxiety and depression that often accompany DLB. They may prescribe anti-depressant or anti-anxiety medications.
• Speech therapy: Speech therapists can improve your ability to communicate clearly and swallow and eat more effectively.

Palliative care focuses on quality of life and symptom relief for anyone at any stage of a long-term illness.

At Penn Medicine, our palliative care specialists provide physical, mental, emotional, and spiritual support for people with dementia with Lewy bodies and their caregivers.