Last month, a documentary movie — "Robin’s Wish" — was released about Robin Williams’ illness and death. Unknown to many of us, the beloved actor and comedian was living with Lewy body dementia for the last few years of his life.

This movie is likely the first time many people will hear the phrase Lewy body dementia. Even though it is the second most common dementia (second after Alzheimer’s), this disease is not well known. This lack of understanding makes it very difficult to properly diagnose the disease. 

What is Lewy body dementia? LBD is a disease associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, affect chemicals in the brain whose changes, in turn, can lead to problems with thinking, movement, behavior and mood.

LBD affects an estimated 1.4 million individuals and their families in the United States. LBD typically begins at age 50 or older, although younger people can have it. LBD appears to affect slightly more men than women. No specific lifestyle factor has been proven to increase one's risk for LBD. 

Diagnosing LBD is challenging, as the early symptoms can look like other brain diseases and/or disorders. In addition, it is not uncommon for LBD to occur alongside other brain disorders.

Like Alzheimer’s, LBD is a progressive disease. This means that the symptoms begin slowly but gradually worsen. According to the Lewy Body Dementia Association, the most common symptoms of LBD include:

— Impaired thinking, such as loss of executive function (planning, processing information); memory; or the ability to understand visual information.

— Fluctuations in cognition, attention or alertness.

— Problems with movement, including tremors, stiffness, slowness and difficulty walking.

— Visual hallucinations (seeing things that are not present).

— Sleep disorders, such as acting out one’s dreams while asleep.

— Behavioral and mood symptoms, including depression, apathy, anxiety, agitation, delusions or paranoia.

— Changes in autonomic body functions, such as blood pressure control, temperature regulation, and bladder and bowel function.

Research is continuing to be performed to increase our understanding of LBD and to develop tools for diagnosis and treatment. LBD researchers are working toward a day where LBD may ultimately be prevented or treated more effectively.

Early diagnosis of LBD is critical, as the disease may affect an individual’s cognitive abilities, motor functions and/or ability to complete activities of daily living. Treatment should always be monitored by a physician, as medications that are used for other dementias sometimes are not appropriate for the person living with LBD. The wrong medication can make symptoms worse or cause other issues. 

LBD affects a person’s mood, thoughts, movement and more. LBD patients and families need considerable assistance. SeniorCare provides caregiver support that is specifically designed for caregivers of people living with dementia. There are resources available to families and friends supporting a person living with LBD. For information on these resources, call SeniorCare at 978-281-1750 and ask to speak with the caregiver support specialist.

For more information about LBD, visit the Lewy Body Dementia Association website at or follow its Facebook page (@lewybodydementia) or Twitter feed (@LBDAssoc). 

Tracy Arabian is the communications officer at SeniorCare Inc., a local agency on aging that serves Gloucester, Beverly, Essex, Hamilton, Ipswich, Manchester-by-the-Sea, Rockport, Topsfield and Wenham.

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