Understanding Lewy Body Disease

October 30, 2017


One of the most aggressive types of dementia in terms of symptoms and challenges for the caregiver is Lewy Body Dementia, or LBD.  It is named for the German researcher, Dr. Lewy, who discovered the abnormal protein deposits (“bodies”) in the brains of people suffering from this disease.

There are two types of LBD, both related to Parkinsonism due to how the disease affects the movement (muscular rigidity, tremors, stiffness) of the individual. As LBD progresses, the two forms become more and more similar.

  • Dementia with Lewy Bodies: in this version cognitive symptoms typically appear within 12 months of movement problems
  • Parkinson’s Disease Dementia: in this type, cognition problems appear more than a year after the onset of challenged movement

LBD affects more than one million people in the United States. Symptoms start slowly and worsen over time. On average, the disease lasts five to seven years from the time it is diagnosed

In many ways, LBD is more challenging than other dementias due to the hallucinations and delusions patients experience. The hallucinations will often seem quite real, leading your loved one to become agitated and anxious. The best approach for caregivers is to respond to the anxiety and feelings, rather than arguing that the hallucination is not true. Tune into your loved one’s emotions offering empathy and concern.

As with any dementia, there are things you can do in the care environment that might make a difference.   A common source of distress is pain. Seniors might have pain somewhere in their body that they cannot describe. But you might notice that they favor their right leg when they walk. Maybe their shoes are too tight or maybe their knee is bothering them.

Another environmental factor might be TV shows, especially the news. Most news is bad news with upsetting images. War in the Middle East might be confused as a conflict at home. Forest fires in the Rocky Mountains might be imagined as being right here in Chapel Hill.

As with any dementia, there is no cure. You can control environmental factors, to a point. A physician might prescribe meds that help manage behavior, to a point.  At the end of the day, the most powerful care tool you have is understanding the nature of the disease and accepting that it is not your loved one’s desire to act the way he or she does.


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