Lewy Body Dementia (LBD)

Lewy body dementia (LBD) is a type of dementia that gets worse over time. It is the second most common neurodegenerative disease after Alzheimer’s disease, but it can be hard to diagnose. At Banner Health, we understand that getting the right diagnosis early can make a big difference in managing your symptoms and improving your quality of life. We offer:

• Expert evaluations
• Advanced imaging, sleep studies and neuropsychological testing
• Personalized care plans
• Caregiver support

Our memory and movement specialists are here to help you get the answers, support and treatment you need.

What is Lewy body dementia?

LBD (sometimes call Lewy body disease) is a condition caused by abnormal protein deposits, called Lewy bodies, which damage areas of the brain and affect how it works. These changes impact movement, thinking, memory, mood, sleep and more.

It’s a term that includes two syndromes:

• Dementia with Lewy bodies (DLB), where thinking problems come first or at the same time as movement problems
• Parkinson's disease dementia, where movement problems come first and memory changes start at least a year later

It’s named after Frederich H. Lewy, MD, who discovered the abnormal proteins in the early 1900s. 

Researchers don’t know what causes LBD. Gene mutations, environmental risk factors and natural aging may play a role. There’s no way to prevent it.

You’re at higher risk if you are:

• Over age 50, and your risk increases as you get older
• Male
• Have a family history of LBD or Parkinson’s disease

What are the symptoms of Lewy body dementia?

The symptoms of Lewy body dementia often change over time and can be different from person to person. Not everyone has all the symptoms.

Symptoms include:

• Thinking problems: LBD can make it harder to plan, solve problems, make decisions and focus. Memory loss can occur but it’s not as noticeable in early LBD, compared to early Alzheimer's disease. 
• Visual hallucinations: Many people with LBD see things that aren’t there and visual hallucinations are often an early symptom. People often have the same hallucinations repeatedly. Interestingly, individuals with LBD are frequently not bothered by their hallucinations and may never report them to their health care providers unless specifically asked. People with LBD may also have other vision problems, such as less depth perception and poor hand-eye coordination. Hallucinations involving sounds, smells or touch happen sometimes but they are less common.
• Fluctuations in attention: People might have times when they are alert and other times when they are confused or unresponsive. Attention can change in the same day or from day to day.
• Movement issues: These include slow movements, rigidity or stiffness, tremors, a shuffling walk, balance and coordination problems, trouble swallowing, falls and fewer facial expressions. 
• Sleep problems: Rapid eye movement (REM) sleep behavior disorder is common and can begin before other signs of dementia. With this disorder, people unknowingly act out their dreams. They may flail, punch, yell or talk when they are asleep. These may begin 5 to 10 years before people ever have symptoms of cognition or motor changes. People with LBD may also be very tired during the day, have changes in their sleep patterns and have insomnia.
• Changes in body functions: LBD can cause sudden drops in blood pressure when standing up, dizziness, fainting, being sensitive to heat and cold, sexual problems, sweating, urinary or fecal dysfunction or incontinence and constipation.
• Behavioral and mood symptoms: As people have more trouble thinking, they may have depression, apathy, anxiety, agitation, delusions (false beliefs) or paranoia (irrational distrust of others).
• Sensory symptoms: Individuals with LBD frequently lose their sense of smell. There is also research starting to show that color vision might be different as well, but that is less well known.

LBD impacts many different areas in the brain and body, so people with LBD may need support from a care team that includes cognitive and movement neurologists, sleep specialists, autonomic specialists, physical therapists, speech language pathologists and others.

How is Lewy body dementia different from Alzheimer’s and Parkinson’s?

LBD has symptoms that overlap with both Alzheimer's disease and Parkinson's disease, but it isn’t exactly the same.

Compared to Alzheimer’s disease

• Memory problems are usually an early symptom of Alzheimer’s and may show up later in LBD. Individuals with LBD more frequently show changes in visual perception upon evaluation. 
• Visual hallucinations are much more common in early LBD and usually only happen late in Alzheimer's.
• Bigger fluctuations in mood, thinking and alertness are more common early on in LBD.
• REM sleep behavior disorder is more common in LBD.
• Blood pressure drops, dizziness, falls and urinary incontinence are much more common in early LBD.

Many people with Lewy body dementia also have Alzheimer's disease and Lewy bodies may be found in other types of dementia, so it can be hard to figure out what’s causing symptoms in the early stages.

Compared to Parkinson’s disease

Parkinson’s disease is a movement disorder without any changes in memory or thinking. When people with Parkinson’s disease begin to experience memory changes, they may progress to Parkinson's disease dementia (PDD), which is included under the umbrella of LBD.

How is Lewy body dementia diagnosed?

It can be hard to diagnose LBD, since early symptoms are similar to symptoms of other brain conditions or mental health issues. Researchers are working on specific tests to detect LBD. However, there are a wide range of tools currently available to help understand your symptoms, rule out other conditions and diagnosis LBD. 

These tests include:

• Medical history and physical exam: Your provider will ask about your symptoms and may speak with family members. 
• Imaging tests: MRI and CT scans help rule out other causes like brain bleeding or tumors. 
• Dopamine scan: A DaTscan looks for dopamine deficiency, a sign of possible LBD.
• Neurological exam: This test checks thinking abilities like memory, word-finding, attention and visual-spatial skills.
• Blood tests: These can rule out other dementia causes, like thyroid conditions, vitamin B12 deficiencies or infections.
• Sleep studies: An overnight sleep study can check for REM sleep behavior disorder.
• Skin Biopsy: Similar to a dermatologist’s office, your neurologist may take a small portion of your skin and send for analysis of the protein clumps seen in LBD.
• Cerebrospinal Fluid: Your physician may suggest you undergo a lumbar puncture and your fluid be sent for analysis of proteins seen in LBD, Alzheimer’s disease or both. 

Early diagnosis helps make sure that treatment is effective and avoids medications that could make symptoms worse. People with LBD may react differently to some medications, compared to those with Alzheimer's or Parkinson's disease.

Can Lewy body dementia be treated?

Currently, there is no cure for LBD. Care focuses on managing symptoms and improving quality of life.

These medications may help manage symptoms:

• Cholinesterase inhibitors like rivastigmine, galantamine and donepezil for cognitive symptoms
• Carbidopa-levodopa for tremors, rigidity and improvement of other movement symptoms. Sometimes Zonisamide may be added on.
• Pimavanserin for hallucinations
• Clonazepam and melatonin for REM sleep behavior disorder
• Antidepressants like selective serotonin reuptake inhibitors (SSRIs), since depression and anxiety is common in people with LBD
• Memantine, a medication for Alzheimer's-related dementia that may work for people with LBD 

These therapies and lifestyle changes may help improve quality of life:

• Physical and occupational therapy to help with movement and daily activities
• Speech therapy for communication and swallowing difficulties
• Support groups for care tips and comfort
• Individual and family therapy for emotional support
• Exercise and a healthy diet for overall wellness
• Adjustments to daily routines to help manage symptoms

In advanced cases, palliative care, which focuses on symptom relief, comfort and support, may be a better choice.

When should you talk to a specialist?

It is important to talk to a health care provider if you or a loved one has symptoms such as:

• New or worsening confusion or memory changes
• Visual hallucinations
• A shuffling walk or tremors
• Acting out dreams during sleep
• Sudden changes in thinking or mood

With early evaluation and diagnosis, you can get started with the right treatment, which may lower the risk of complications.

How Banner Health supports you and your family

Living with or caring for someone with LBD is challenging. At Banner Health, we’re here to help you every step of the way. Our services include:

• Specialized care from memory and movement disorder teams
• Personalized treatment plans and symptom management
• Education and support for caregivers
• Access to clinical trials and cutting-edge research
• Guidance on long-term planning, medication safety and lifestyle changes that may improve daily living

If you think you or a loved one may have Lewy body dementia, our team of memory and movement experts can guide you through diagnosis, treatment and next steps. Reach out to learn more.