What is this study about? The Care-Resistant Behavior Internet Training for Caregiver Networks (CuRB-IT:CaN) Study is testing the feasibility of delivering an existing coaching intervention called “Care-Resistant Behavior Internet Training” (CuRB-IT) to networks of unpaid family care partners who are providing care for a person living with dementia. Care partners sometimes experience care-resistant behavior from a person living with dementia in the home. This study aims to obtain preliminary data about the composition of care partner networks in these situations; to test the feasibility of pro ..read more

What is this study about? This preliminary study aims to understand the needs, concerns, strategies, and advice of family caregivers of persons with Lewy body disease. Then, utilizing information gathered, develop a scale or test that researchers can use in future studies to measure the ease or difficulty of activities associated with caregiving. What’s involved? Participants will be asked to take part in a telephone interview lasting about 60 minutes. Who can participate? The researchers invite primary unpaid caregivers, who are at least 18 years old, for an adult with Lewy Body Disease (eith ..read more

What is this study about? This study will examine inflammation in people with Dementia with Lewy Bodies (DLB) and Mild Cognitive Impairment with Lewy Bodies (MCI-LB) to examine the correlation between inflammation and clinical features. This study is also being used to establish a group of individuals available for selection and enrollment into future research opportunities. What’s involved? Participants will attend one visit that will last 60 to 90 minutes; during this visit there will be clinical testing including, but not limited to: neuropsychological testing, medical history review, motor ..read more

March 18, 2024 Hallucinations and delusions (also called psychosis) are prominent features of Lewy body dementia (LBD), occurring in both dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD). The FDA recently approved a change to the prescribing label for pimavanserin, a drug previously approved for psychosis in Parkinson’s disease. The new label makes it clear that pimavanserin is FDA-approved for treatment of psychosis in Parkinson’s disease dementia. The label change is supported by data from the HARMONY study of pimavanserin in dementia-related psychosis, a Phase 3 clinic ..read more

What is this study about? This study compares the effectiveness of the two most prescribed medications for the treatment of hallucinations in Parkinson’s Disease and dementia with Lewy bodies: quetiapine (Seroquel) and pimavanserin (Nuplazid). Researchers hope to learn which drug improves the treatment of hallucinations. What’s involved?  Participants will be assigned by chance to receive either quetiapine or pimavanserin to treat hallucinations during a routine clinic appointment with a UT Health San Antonio neurologist. Participants will complete a questionnaire at the initial visit and ..read more

Originally developed in the UK for dissemination via the National Health Service, the Diamond Lewy Management Toolkit provides a comprehensive overview of the management of the complex symptoms of Lewy body dementia: sleep, cognition, psychiatric symptoms, autonomic features and motor symptoms. The Lewy Body Dementia Association (LBDA) obtained exclusive rights to adapt the information in the UK management toolkit for the US based health care system. Selected experts from LBDA’s Research Centers of Excellence Clinical Care and Professional Education Working Group edited the ..read more

ATLANTA – 02/6/2024 – The Lewy Body Dementia Association (LBDA) announced today the appointment of Sarah Sung as President of the Board of Directors.  Sung joined the board of directors in 2022 and most recently served as the secretary.  She has a personal understanding of Lewy body dementia (LBD) through her father who had LBD with Parkinson’s. For her, being a member of the board is an opportunity to help other families and raise awareness for early diagnosis. Sung brings a background in content marketing and brand strategy along with her experience working in startups and global b ..read more

Two articles published on January 22, 2024, in The Lancet Neurology journal are proposing complementary but different research frameworks for biological definitions of Lewy body disease, a label reflecting the underlying biological changes behind dementia with Lewy bodies (DLB) and Parkinson’s disease (PD). Two groups of preeminent PD researchers have each proposed a biological framework against which research theories can now be rigorously tested. These frameworks will help advance the understanding of PD and its similarities with and differences from dementia with Lewy bodies (DLB). &nb ..read more

Ece Bayram, MD, PhD. Researcher from the Lewy Body Dementia Association’s Research Center of Excellence at University of California San Diego December 12, 2023   Research suggests men have a higher risk for developing Lewy body dementia (LBD) than women. Let’s take a brief look into how so. LBD is associated with Lewy body pathology in the brain, that is, the presence of “clumps” of the misfolded protein alpha-synuclein. The chance of experiencing dementia is higher when the pathology is more widespread in the brain. Men are more likely than women to have the widespread Lewy body patholog ..read more

November 3, 2023 Caring for a person with Lewy body dementia (LBD) can be very difficult, For example, cognitive changes in LBD are more likely to involve executive function and visuospatial function rather than memory, and behavior changes are more common. Furthermore, changes in sleep, movement, and autonomic functions (such as fainting) are common in LBD but rare in other dementias. In fact, the medical research literature shows that LBD caregivers have greater strain than caregivers for people with Alzheimer’s and other forms of dementia [1-3]. Unfortunately, greater caregiver strain leads ..read more