LBD Advocates Weigh in on National Strategy

Together with representatives from LBDA, members of the LBD community attended a research summit at the National Institutes of Health (NIH) to listen to the progress made in LBD and provide input to newly updated recommendations on LBD research priorities. The Alzheimer’s Disease-Related Dementias Summit featured sessions on LBD, mixed dementias, vascular contributions to cognitive impairment and stroke, frontotemporal dementia, and health disparities communities. LBD caregivers and advocates spoke out about the continued barriers to diagnosis and treatment.

The LBD session, led by co-chairs Dr. Dennis Dickson of Mayo Clinic and Dr. Karen Marder of Columbia University, featured an array of LBD experts from across the United States. Presentations included the summary of progress made towards each of 8 research priorities from the 2013 summit. Speakers also reviewed draft updates to the research recommendations and suggested milestones in order to measure progress in the coming years.

LBD caregivers and advocates spoke out about the continued need for easier access to LBD experts for clinical care, healthcare professional education about medication sensitivities, a greater focus on non-pharmacological therapies and prioritizing the research of dementia with Lewy bodies equally with Parkinson’s disease dementia.

Angela Taylor, LBDA’s Director of Programs, presented a recommendation from the patient advocacy organizations’ committee to update terminology used when discussion dementia. Scientific advances over the last decade revealed most individuals with dementia have several disease processes underlying their dementia symptoms. This high prevalence of mixed dementias requires the launch of a national conversation of leading stakeholders on what terminology should be used when discussing dementia as a whole, the individual clinical diagnoses, and the underlying disease processes. Better nomenclature may help raise public awareness, facilitate symptom reporting and diagnosis, assist families in finding dementia services at the local, state or federal level, as well as advance research and meet the needs of regulatory agencies.

A final report will be published in the coming months after approval by the National Institutes of Health and the Advisory Council on Alzheimer’s Research, Care and Services.
The summit was held on March 29 and 30 on the NIH campus in Bethesda, MD and the webcast recording is now availabile.

To watch the LBD session, click here.