Comment from Herron, Angela, Lewy Body Dementia Association, Inc.

Social Security Administration The Lewy Body Dementia Association (LBDA) supports the Social Security Administration’s proposal to amend the rules to permit disability examiners in the State agencies to make fully favorable determinations in certain claims for disability benefits under titles II and XVI of the Social Security Act (Act) without the approval of a medical or psychological consultant on a temporary basis to claims under consideration for Quick Disability Determinations (QDD) or the compassionate allowance initiative. Approximately 1.3 million people in the United States have Lewy body dementia (LBD). Families who are struggling with LBD face a progressive and disabling disorder that affects thinking, movement and behavior. Due to multiple factors, including limited physician awareness about LBD and complex diagnostic criteria, LBD is highly under-diagnosed, most often misdiagnosed as Alzheimer’s disease (AD). LBD occurs most often in the elderly, but as LBD awareness grows, physicians are diagnosing people with LBD in their 50’s and early 60’s with increasing frequency. While there is no data available to determine the proportion of people with LBD under the age of 65, research shows that LBD has a typical duration of 5-7 years from the time of diagnosis and that people with LBD reach certain clinical endpoints (like admission to a nursing home or death) about 10 years earlier than people with AD. The Alzheimer’s Association estimates about 5% of people with Alzheimer’s disease are below the age of 65. If the same 5% figure is applied to LBD, it is reasonable to assume the patient population of people with younger onset LBD may be approximately 65,000 cases. The cognitive changes in LBD feature prominent attention, visual-spatial and executive dysfunction, impairing a person’s abstract or analytical thinking and problem solving. People with LBD lose their ability to make appropriate and safe decisions, and medication monitoring