ABOUT LEWY BODY DEMENTIA

"You treat a disease, you win, you lose. You treat a person, I guarantee you, you’ll win, no matter what the outcome"

– Robin Williams, comedian, actor, icon.  1951-2014, diagnosed with severe LBD.

WHAT

Lewy Body Dementia (LBD) or sometimes referred to as Dementia with Lewy Body (DLB) is caused by an abnormal buildup of protein deposits, called Lewy bodies, develop in nerve cells in the brain regions involved in thinking, memory and movement (motor control).  This protein is also associated with Parkinson's disease. People who have Lewy bodies in their brains also have the plaques and tangles associated with Alzheimer's disease.

Lewy body dementia causes a progressive decline in mental abilities. People with Lewy body dementia may experience visual hallucinations and changes in alertness and attention. Other effects include Parkinson's disease-like signs and symptoms such as rigid muscles, slow movement and tremors.

WHEN

Typically LBD starts around 50 or older, even though younger people can start to show signs.

IS IT GENETIC

Rarely. According to the National Institute of Health, “While having a family member with LBD may increase a person's risk, LBD is not normally considered a genetic disease. Variants in three genes—APOE, SNCA, and GBA—have been associated with an increased risk of dementia with Lewy bodies, but in most cases, the cause is unknown. 

At this time, no genetic test can accurately predict whether someone will develop LBD, and genetic testing is not usually used in diagnosis.”

IS THERE A CURE

No, at this time there is no cure or treatment to slow or stop the progression. However, clinical trials are finding promising results for treatments. There is also an increasing number of other interventions (medical and non medical) to help manage symptoms. See the resources below for more information.

SELF-CARE OPTIONS

While there is not a treatment at the time to slow the disease, the symptoms can be managed.  Physical and Speech therapy have been shown to have mental and physical relief for those inflicted. Note: Any treatment should be done under supervision of a professional. Antipsychotic drugs can worsen Lewy body dementia symptoms, therefore, non-drug approaches may be helpful to first try. Suggestions from the Mayo Clinic include:

  • Modifying the environment. Reducing clutter and distracting noise can make it easier for someone with dementia to function.
  • Offering soothing responses. Reality may be shifted, daily tasks may become difficult.  As a caregiver, family member or friend, offering reassurance and validation of his or her concerns can go a long way.
  • Creating daily routines and keeping tasks simple. Break tasks into easier steps and focus on successes, not failures. Structure and routine during the day can be less confusing.

External Resources

Note: Links/URLs are great when they work, a huge annoyance when they don’t.  They may update faster than we can catch them.  To help keep up, in addition to the link, we’ve included the description of the location of the information to assist with good old fashioned web searching.

Disease specific information and support:  

The Family Caregiver Alliance, has a "navigator" for finding support across the US. https://www.caregiver.org/family-care-navigator

Research and clinical trial information: https://Clinicaltrials.gov

DID YOU KNOW… THREE FAST FACTS

Lewy Body Dementia...

  • Is what impacted Robin Williams. Click here to find out more about Robin’s story: https://n.neurology.org/content/87/13/1308.
  • Impacts approximately 1.5 millions Americans.  
  • Can affect several different brain regions - cerebral cortex, limbic cortex, hippocampus, midbrain and basal ganglia (to name a few).
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