The core mission of the Lewy Body Dementia Association is to provide support and education to those affected by Lewy body dementia and to advance research to better diagnose, treat and ultimately cure and prevent the disorder. There are two forms of Lewy body dementia: dementia with Lewy bodies (DLB) and Parkinson’s disease dementia, both of which affect thinking, movement, behavior, and sleep.
For many DLB families, the first major hurdle is getting an early and accurate diagnosis. Despite multiple doctors’ appointments and visits with specialists, diagnosis is often delayed because the symptoms look like another disorder such as Parkinson’s disease or Alzheimer’s disease. Unfortunately, not all symptoms may be present at the first few doctor’s appointments, especially if the disease is very early on in its development. Getting an early diagnosis allows a comprehensive treatment and management plan to be developed, and creates the best opportunity to avoid medications that can worsen DLB symptoms or even cause permanent harm.
Research advances have revealed that certain test results are highly linked to both the clinical symptoms of DLB and the presence of Lewy bodies in the brain. For the first time, physicians can rely on both symptoms and biomarkers to help make the diagnosis. This means healthcare professionals can now diagnose DLB with greater confidence, even when fewer symptoms are present.
“There is now a consensus amongst experts on DLB that certain symptoms, specifically REM sleep behavior disorder, and tests results, formal sleep study and brain and cardiac imaging, are highly predictive for the presence of Lewy bodies in the brain at autopsy. For this reason, the consensus criteria have been updated to include these findings and now provide important guidance to clinicians trying to diagnose DLB. It is hoped that these new criteria will allow clinicians to diagnose DLB earlier in the disease and thus improve treatment and management for this devastating disease,” says Jim Leverenz, scientific advisory council chair of the Lewy Body Dementia Association, in a release.
The new diagnosis criteria were established when researchers gathered for the 2015 International Dementia with Lewy Bodies Conference. Their goal was to update the criteria last revised in 2005. Leading the effort was Prof. Ian McKeith of Newcastle University and member of the Lewy Body Dementia Association’s Scientific Advisory Council (SAC).
There are now several ways the DLB diagnosis can be made.
- The presence of DLB symptoms alone.
- The presence of fewer DLB symptoms, plus a positive biomarker test result suggesting the presence of Lewy bodies in the brain.
The most common symptoms include dementia, visual hallucinations, changes in movement resembling Parkinson’s disease, and REM sleep behavior disorder (in which a person physically acts out their dreams while asleep). The cognitive symptoms of DLB are considerably different from Alzheimer’s disease in the early stage, as memory may be relatively intact. Other deficits appear instead, affecting attention, the ability to do complex mental tasks like problem solving or following a sequence of steps, and understanding how things relate in three-dimensional space.
A full list of DLB symptoms and details on the new diagnostic criteria can be found on the Lewy Body Dementia Association’s website at www.lbda.org/newdlbcriteria.