1. Marshall, Katherine DNP, NP, PMHCNS-BC, CNE
  2. Hale, Deborah MSN, RN, ACNS-BC

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The death of famous actor and comedian Robin Williams was labeled a suicide until the coroner's report showed the cause of death was Lewy body dementia. This was startling news to his loved ones and providers, as many of them had witnessed the changes and decline he experienced over the last several months of his life, yet none had a clear picture of what he was coping with.


Lewy body dementia is the result of abnormal protein deposits called Lewy bodies in the nerve cells of the brain that are dedicated to thinking, memory, and movement. Patients who have Lewy bodies in their brains also have the plaques and tangles associated with Alzheimer's disease. Lewy body dementia facilitates the progressive decline of cognitive abilities but also includes Parkinson-like signs and symptoms such as rigid muscles, tremors, and slow movement. Typically, Lewy body symptoms include:


* Vivid visual hallucinations are one of the first symptoms, and may consist of shapes, shadows, or animals and people who are not present. Behaviors may become aggressive and difficult to manage with increased paranoia, hallucinations, and delusions.


* Movement disorders: slowed movement, rigid muscles, shuffling gait, and tremor. Gait disturbances often results in falls. These patients usually become wheelchair- and/or bed-bound in the late stages.


* Poor regulation of body systems: orthostatic hypotension, fainting, fluctuations in pulse, sweating, or digestive issues resulting in constipation or loose stools. These gastrointestinal symptoms may be the first sign of Lewy body involvement occurring many years prior to the clinical onset of the disease (Stahl & Morrissette, 2019).


* Cognitive symptoms: memory loss, visual-spatial problems, delusions, disorganized speech, and fluctuating attention. These may vary from hour to hour or day to day.


* Sleep dysfunction: the presence of rapid eye movement (REM) sleep disorder causes individuals to act out their dreams or strike out in their sleep. This is one of the most distinguishing characteristics of Lewy body dementia. An increase in daytime sleepiness results in long naps.


* Depression and apathy: a loss of motivation and sad mood related to their condition. Emotional withdrawal and depression are also common (Mayo Clinic, 2019; Stahl & Morrissette, 2019).



Increased risk factors for Lewy body dementia include age greater than 60 years, family history, and male gender (Mayo Clinic, 2019). Potential environmental factors currently under investigation include: smoking, alcohol use, diet, hypertension, pesticides/insecticides, fungicides, metals, organic solvents, and magnetic fields. Death from Lewy body dementia usually occurs with 4 to 8 years after symptoms start (Stahl & Morrissette, 2019).


A definitive diagnosis of Lewy body dementia is made during brain autopsy. However, there are several characteristics that clinicians look for to rule out or determine disease. According to Mayo Clinic (2019), the diagnosis of Lewy body requires a progressive decline in the ability to think as well as two or more of the following criteria: fluctuating alertness or thinking, repeated specific hallucinations, sleep disturbance, Parkinsonian symptoms, and/or signs and symptoms of autonomic dysfunction. A complete physical, neurological, and cognitive examination should be performed to rule out other conditions.


There is no cure for Lewy body dementia and interventions involve symptom management. Cholinesterase inhibitors, such as rivastigmine (Exelon), donepezil (Aricept), and galantamine (Razadyne) can improve the chemical messages in the brain. This may improve judgment, memory, and thought processes to improve alertness and general cognition; they may also decrease some behavioral issues and hallucinations. Medications such as carbidopa-levodopa (Sinemet) may be helpful in treating parkinsonian symptoms. Dosage and scheduling needs to be monitored closely for effectiveness and key side effects of confusion, hallucinations, and delusions. Psychotropics can be used to treat depression, sleep disturbance, and anxiety. It is highly recommended that anticholinergics be avoided as they promote a decrease in cognitive function. First-generation antipsychotics (e.g., Haldol) should not be used to treat Lewy body dementia due to the high potential for dystonic reaction, severe parkinsonism, sedation, and possible death. A low-dose, second-generation antipsychotic maybe used to manage behaviors if the benefits outweigh the risks, but only on rare occasions for short-term use. Home care clinicians need to work with the patient, caregivers, and family members to closely monitor for benefits of medication, administration practices, and side effects (Mayo Clinic, 2019; Stahl & Morrissette, 2019).


Due to the risk and limited efficacy of psychotropics for treating Lewy body dementia, it is important to consider nondrug approaches that include: modifying the environment by decreasing stimulation, lowering lighting and noise, adjusting temperature for comfort, and providing hydration as needed. Caregivers should attempt to tolerate nonthreatening behaviors, approach the patient in a calm manner, offer reassurances, and avoid challenging the patient. Keep routines simple and consistent, break tasks into simple steps, emphasize success, and avoid criticism. Music, pet, and aromatherapy may help calm anxiety and frustration for both the patient and caregiver. Speak clearly and maintain eye contact, offer one idea at a time, and give the patient time to respond. Exercise can improve the patient's feeling of competence and control over their body, as well as maintaining current physical function. Offer stimulation that is appropriate for the patient's level of cognitive function-puzzles, game shows, whatever the patient will enjoy and participate in. Even watching their favorite football team will provide them an opportunity to engage. Some patients will have behavioral issues that increase in the evening (sundowning); creating a nighttime routine and a calming environment can help with these behaviors.


Home care social workers are excellent resources for local respite agencies, support groups, and counseling resources. The Lewy Body Dementia Resource Center is a grassroots organization headed solely by former care partners of people with Lewy body dementia. Their website can be a helpful source of education and resources. The National Institutes of Health website at is also a source of information on Lewy body dementia.


The patient with Lewy body is unique and struggles with a host of motor, and sleep symptoms not commonly observed in other neurocognitively impaired patients. The public became more aware of the disease with Robin Williams diagnosis and subsequent activism by his wife. The documentary Robin's Wish is an attempt to share their intimate struggles with the disease and create an awareness of Lewy body dementia. The documentary was released in Sept 2020 and is widely available for public viewing on a variety of streaming channels.




Mayo Clinic. (2019, April 26). Lewy body dementia. In Patient Care & Health Information: Diseases & Conditions.[Context Link]


Stahl S. M., Morrissette D. A. (2019). Stahl's Illustrated Alzheimers's Disease and other Dementia's. Cambridge University Press. [Context Link]