Caregiver Corner: Lewy What? Explaining Lewy Body Dementia

Many people first heard the term dementia with Lewy bodies when it grappled headlines alongside Robin Williams, who was diagnosed with the disease before his passing. What should you know about this brain disease? 

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. This progressive disease is often difficult to diagnose. However, knowing the signs can help you or your loved one get answers, and treatment, sooner. 

Symptoms  

Dementia with Lewy bodies can cause confusion, alter the way a person thinks and behaves and impact movement and memory.  

Symptoms include: 

• Challenges with memory, concentration or multitasking. 

• Tremor 

• Rigidity 

• Slow movement 

• Balance issues and other movement symptoms 

• Sleep disorders including Rapid eye movement (REM) and Sleep behavior disorder (RBD), which can cause a person to physically act out their dreams. 

• Depression is a common symptom for DLB and Parkinson’s. Untreated, depression can lead to suicidal thoughts.  

Diagnosis 

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. 

DLB is known as an atypical parkinsonism. Atypical parkinsonism is difficult to diagnose. Over half of the people living with atypical parkinsonism disorders are initially diagnosed with Parkinson’s disease (PD). In most cases, people see multiple doctors before receiving a diagnosis. 

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. 

Learn More 

If you recognize dementia with Lewy bodies symptoms in your loved one, speak to their Parkinson’s doctor, or a neurologist, who can help you find answers. For more information, explore these resources:  

• Lewy Body Dementia Association 

• Dementia with Lewy Bodies 

• Robin Williams: Lewy Body Dementia, Suicide and Parkinson’s 

• Podcast Episode 87: What is Lewy Body Dementia and How Does it Relate to Parkinson’s? 

• Dementia & Parkinson’s 

We’re here for you. Call the Parkinson's Foundation Helpline 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s and caregiving questions.