What is Lewy body dementia?
Lewy body dementia, or LBD, is a brain disease that affects thinking, movement, sleep, alertness, and behavior. It happens when clumps of a protein called alpha-synuclein build up inside brain cells. These clumps are called Lewy bodies.
The term Lewy body dementia includes two conditions. In dementia with Lewy bodies, thinking problems start first or at about the same time as movement problems. In Parkinson’s disease dementia, thinking problems start after years of Parkinson’s disease.
LBD affects both memory and movement, so it is often confused with other conditions. Because we treat both memory disorders and movement disorders, we can look at the whole picture. LBD is also one of the atypical Parkinson disorders.
Common symptoms
LBD looks different in every person. The most common symptoms are:
- Changes in attention and alertness. Thinking can change a lot from day to day, or even hour to hour. A person may seem clear one day and very confused the next, or stare into space for long periods.
- Seeing things that are not there. Visual hallucinations are common. People often see people or animals that are not there. At first, many people know they are not real.
- Acting out dreams. In REM sleep behavior disorder, people talk, shout, punch, or kick during dreams. This can start years before other symptoms.
- Movement changes. Slowness, stiffness, shuffling steps, and falls, like in Parkinson’s disease. Tremor is less common.
Other common symptoms include trouble with planning and judging distances, daytime sleepiness, depression, anxiety, and loss of the sense of smell.
Early changes in how the body runs itself. LBD can affect the autonomic nervous system, which controls blood pressure, digestion, and the bladder. In LBD, problems such as lightheadedness when standing (neurogenic orthostatic hypotension) and bladder trouble can appear in the first 2 to 3 years, much earlier than is typical in Parkinson’s disease. Lightheadedness when standing can lead to falls, so tell us if it happens to you.
How we make the diagnosis
There is no single test for LBD. The diagnosis is made mainly through a careful history and exam by a specialist who knows both memory and movement disorders.
At your visit, we will:
- Talk with you and a family member or care partner about thinking, sleep, alertness, and movement
- Ask about hallucinations and acting out dreams, since people often do not mention them unless asked
- Do a neurological exam, including how you walk and move
- Do in-office cognitive testing to check attention, memory, and problem solving
- Check for lightheadedness when standing and other autonomic symptoms
We use blood tests to rule out reversible causes. A brain MRI can look for strokes or other changes. When the diagnosis is not clear, we may order a DaTscan, a brain scan that shows how the brain’s dopamine system is working. Sometimes we also test for Alzheimer’s disease, because it can cause some of the same symptoms.
Treatment options
There is no treatment that stops LBD, but many symptoms can be treated. Treatment is built around the symptoms that matter most to you and your family.
Thinking and hallucinations. Cholinesterase inhibitors, a type of memory medicine, may help with attention, thinking, and hallucinations in LBD.
Movement. Carbidopa/levodopa may help slowness and stiffness. We start low and go slow, because it can make hallucinations worse in some people. Physical therapy helps with walking, balance, and fall prevention.
Sleep. We treat acting out dreams and make the bedroom safer to prevent injuries.
Neurogenic orthostatic hypotension. We screen for it and treat it, which can help prevent falls.
Mood. Depression and anxiety are common and can be treated.
Sensitivity to some medicines
People with LBD can be very sensitive to some antipsychotic medicines, which are sometimes used for hallucinations, confusion, or agitation. These medicines can cause severe stiffness, worse confusion, or other serious reactions that can be life-threatening. Some medicines for sleep, bladder control, and allergies can also make confusion worse.
Please check with us before starting any new medicine. Make sure every doctor and hospital knows about your LBD diagnosis, especially before surgery or an emergency room visit. Do not stop a medicine you already take without talking with us first.
Your medication list
Make sure you bring a typed list of medications used to treat Lewy body dementia that failed or caused side effects. Use BPMedTracker to track your medications and print a list.
When to see a specialist
Consider seeing a specialist if you or a loved one has:
- Thinking or alertness that changes a lot from day to day
- Seeing things that are not there
- Acting out dreams during sleep
- Memory or thinking changes along with slowness, stiffness, or falls
- Lightheadedness when standing, along with thinking changes
- A bad reaction to a medicine used for hallucinations or confusion
LBD is often missed or mistaken for another condition. An accurate diagnosis helps avoid medicines that can cause harm. Call 940-828-MOVE (6683) to schedule a visit.
Support and resources
Caring for someone with LBD can be hard, and the symptoms can be confusing to others. The Lewy Body Dementia Association offers education and the Lewy Line for families and care partners. In our area, the North Dallas/Richardson Lewy Body Dementia Caregivers Support Group brings caregivers together to share what works.
