Dementia with Lewy Bodies

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Approximately 1.4 million people in the U.S. are estimated to live with dementia with Lewy bodies (DLB), a progressive brain disorder also known as Lewy body dementia. The journey for people living with this difficult to diagnose, progressive condition can be especially complex.

Dementia with Lewy bodies is diagnosed when cognitive decline (thinking changes) is an early symptom, occurring before or within a year of the onset of movement symptoms.

Dementia with Lewy bodies can cause confusion, alter the way a person thinks and behaves and impact movement and memory. DLB-associated dream enactment — speaking, moving and miming dreams — can disrupt sleep. People with DLB can also experience depression and other mood changes.

Raising Awareness

Legendary comedian and actor Robin Williams, who passed away with Lewy Body Dementia, continues to bring national awareness to the disease.

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Robin Williams

Atypical Parkinsonism

Together with Parkinson’s disease dementia, dementia with Lewy bodies is the second-most common type of neurodegenerative dementia, after Alzheimer’s disease.

DLB is known as an atypical parkinsonism. Atypical parkinsonism disorders include:

  • Dementia with Lewy bodies (DLB)
  • Multiple System Atrophy (MSA)
  • Progressive Supranuclear Palsy (PSP)
  • Corticobasal Syndrome (CBS)

Atypical parkinsonism is difficult to diagnose. Over half of the people living with atypical parkinsonism disorders are initially diagnosed with Parkinson’s disease (PD). On average, it can take up to three years after the start of symptoms to receive an accurate diagnosis of atypical parkinsonism.

The Links Between Dementia with Lewy Bodies and Parkinson’s

When a person lives with Dementia with Lewy bodies, they can experience many of the same symptoms as someone with Parkinson’s disease. Due to this overlap, many people with DLB are initially diagnosed with PD.

The protein alpha-synuclein is involved in both DLB and PD. In these diseases, damaged alpha-synuclein folds into an irregular shape and forms toxic clumps — known as Lewy bodies — that alter the way brain cells work. Because of this, both dementia with Lewy bodies and Parkinson’s disease are sometimes referred collectively as Lewy body diseases. How these toxic clumps lead to disease continues to be an intense area of research.

Lewy bodies are linked to progressive dopamine loss in the brain, in addition to affecting many other neurotransmitters and circuits. As the disease progresses, it can affect a person’s mood, memory, the way they move and more.

The Difference Between Dementia with Lewy Bodies and Parkinson’s Disease Dementia

Lewy Body Dementia is an umbrella term that includes both dementia with Lewy bodies (DLB) and Parkinson’s Disease Dementia (PDD).

  • In dementia with Lewy bodies, cognitive decline is often the first symptom, or it begins within one year of movement symptoms. When cognitive decline is the initial symptom and Parkinson’s-like movement symptoms have yet to develop, LBD can sometimes be misdiagnosed for Alzheimer’s disease, another type of dementia.
  • Parkinson’s Disease Dementia begins as a movement disorder. Permanent changes in cognition develop gradually, over time. Although cognitive change can be a non-movement symptom of Parkinson’s, not everyone with PD will develop dementia.

Cognitive issues are never too mild to discuss with your doctor. It is important to seek expert advice, preferably from a neurologist or movement disorders specialist. Medical problems, medication issues and some Parkinson’s symptoms can be mistaken for dementia. Getting an accurate diagnosis early can make a difference.

Symptoms

Early on, symptoms can be mild for people living with dementia with Lewy bodies. Common symptoms can include:

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The progression of cognitive changes can impact daily living. DLB can cause hallucinations — seeing, hearing or feeling things that are not there. Visual hallucinations are often the most common. Someone with dementia with Lewy bodies can also experience irrational views and persistent thoughts not based in reality. These are called delusions.

Treatment

While there are currently no medications that slow or reverse DLB, there are many treatments aimed at relieving symptoms and helping ensure safety. People living with dementia with Lewy bodies benefit most from comprehensive, team-based healthcare that includes a mental health professional. 

Caring for the body and the mind — through medication, physical and mental exercise — is essential for people living with DLB.

Symptom management is tailored to a person’s unique needs and can include:

  • Medications such as donepezil (Aricept), galantamine (Razadyne) or rivastigmine (Exelon), may improve cognitive symptoms.
  • Selective serotonin reuptake inhibitors (SSRIs) and Serotonin and norepinephrine reuptake inhibitors (SNRIs) medicines are used to address depression and anxiety. 
  • Clozapine (Clozaril), quetiapine (Seroquel) and pimavanserin (Nuplazid) are used to lessen hallucinations.
  • Melatonin or clonazepam can be helpful for RBD.

For those with dementia with Lewy bodies, many Parkinson’s dopamine medications can cause or worsen confusion. These may need to be reduced or eliminated, under a doctor’s guidance. Certain medications sometimes used to treat tremor, called anticholinergics, such as trihexyphenidyl (Artane) and amantadine, can also negatively impact thinking.

Older antidepressants, some bladder medications and nonprescription antihistamines containing diphenhydramine (Benadryl and others) can also negatively impact cognition.

For Care Partners

Significant cognitive decline also heavily impacts care partners. Those who care for someone with dementia with Lewy bodies must actively work to prioritize self-care and find healthy ways to address stress. Caring for yourself can help you take the best care for another.

Explore Care Partner Resources

Ongoing Research

Researchers are working to uncover exactly what causes dementia with Lewy bodies.

Current research spans several areas, from studies that aim to spot early changes in people who might develop dementia with Lewy bodies to those examining different therapies including medications, mental exercise and exercise.

Resources

The Parkinson’s Foundation offers information and resources that can provide support. Our Helpline specialists can offer expert referrals and resources at 1-800-4PD-INFO (1-800-473-4636) or Helpline@parkinson.org.

 

Page reviewed by Dr. Chauncey Spears, Clinical Assistant Professor and Dr. Sydney M. Spagna, Clinical Fellow at the University of Michigan.

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