2022 Pilot Awards for Global Brain Health Leaders (GBHI)

Lewy Body Ireland

Can a novel, non-profit organization help promote the care and maintenance of people who have dementia with Lewy bodies in Ireland?

Karen Meenan, Ph.D.
College of the Holy and Undivided Trinity of Queen Elizabeth
Dublin, Ireland

Background

Dementia with Lewy bodies (DLB) is a brain disease characterized by the presence of protein clumps in the brain known as Lewy bodies; the primary component of these clumps (Lewy bodies) is a protein known as alpha synuclein. Lewy body formation is thought to produce a series of damaging effects in the brain as the clumps begin to form inside nerve cells. People with DLB can develop hallucinations, problems with movement, and loss of memory and other cognitive functions. The disease, however, is not as well understood as other causes of dementia, and it is often underdiagnosed, mis-diagnosed or poorly treated in many parts of the world. Such problems indicate the need for resources that promote DLB awareness and care in underserved countries.  

Research Plan

Dr. Karen Meenan and colleagues will develop and publicize a novel non-profit organization in Ireland called Lewy Body Ireland. This organization will provide care and support services for Irish people with LBD and their caregivers. For example, Lewy Body Ireland plans to offer a monthly online service called “Tea-Time with Lewy,” in which individuals living with early-stage LBD and their families can meet with clinicians and researchers to learn more about the disease and its management. The researchers also plan to develop and circulate educational materials to help promote DLB knowledge and care among both families and physicians.     

Impact

The work of this study could provide a novel, community-oriented resource for the care of individuals living with DLB in Ireland. It could also promote the creation of similar organizations in other countries and for other types of brain disease.