By Robin Shepherd Executive Director and Co-Founder, The Sue’s Story Project
Lewy Body Dementia Hidden in Plain Sight
What is LBD?
How does LBD fit into the dementia syndrome?
Lewy body dementia (LBD) is a complex and challenging brain disorder that affects thinking, movement, behavior and mood. It has been “hidden in plain sight” for decades despite the fact that it is a leading cause of dementia, along with Alzheimer’s and vascular diseases.
Lewy body disease is associated with two possible outcomes of progressive dementia: dementia with Lewy bodies (DLB) or Parkinson's disease dementia (PDD). Because DLB shares some symptoms with Parkinson’s, Alzheimer’s, and psychiatric disorders, it can be difficult to diagnose or be misdiagnosed. It is not unusual for patients to consult with multiple physicians over a period of three or more years before receiving an LBD or DLB diagnosis. Today, the term Alzheimer’s Disease and Related Dementias (ADRD) is used by the National Institutes of Health (NIH) and other organizations to collectively refer to neurodegenerative causes of dementia. To further clarify, ADRD is defined to include Lewy body dementia (LBD) as well as frontotemporal degeneration (FTD), vascular contributions to cognitive impairment/dementia (VCID), and mixed etiology dementias (MED).
This historic lack of awareness, education, training and research focused on Lewy body dementia created a domino effect that has hindered progress toward a cure and thwarted efforts to care for people living with LBD today. More attention and resources must be focused on LBD to fully understand the cause, develop tests for a definitive diagnosis, and pursue clinical trials to find a cure. Until there’s a cure, improvements are needed in healthcare approaches and options for people with LBD and their caregivers.
20 | The Bulletin | Fourth Quarter 2021