Research Priorities of Individuals and Caregivers with Lewy Body Dementia: A Web-based Survey

Samantha K. Holden, Noheli Bedenfield, Angela S. Taylor, Ece Bayram, Chris Schwilk, Jori Fleisher, John Duda, Holly Shill, Henry L. Paulson, Kelly Stacy, Julia Wood, Pamela Corsentino, Sharon J. Sha, Irene Litvan, David J. Irwin, Joseph F. Quinn, Jennifer G. Goldman, Katherine Amodeo, John Paul Taylor, Bradley F. BoeveMelissa J. Armstrong

Research output: Contribution to journalArticlepeer-review


Introduction: Lewy body dementia (LBD) is common, yet under-recognized and under-researched. To plan studies with the highest impact, engagement of the community personally affected by these conditions is essential. Methods: A web-based survey of people living with LBD and current and former caregivers of people with LBD queried research priorities through forced ranking and exploration of burden of LBD symptoms. Specific caregiving needs in LBD and perceptions of research participation were also investigated. Results: Between April 7, 2021 and July 1, 2021, 984 responses were recorded. Top research priorities included disease-modifying therapies and improved disease detection and staging. People with LBD were interested in pathophysiology and more bothered by motor symptoms; caregivers were interested in risk factors and symptomatic therapies and more bothered by neuropsychiatric symptoms. Few available LBD treatments and resources were rated as helpful, and many valuable services were never received. Previous participation in LBD research was infrequent, but interest was high. Discussion: People with LBD and caregivers highlighted the need for research across all aspects of LBD, from pathophysiology and disease modification to prognosis, education, symptomatic treatments, and caregiver support. Funders should increase support for all aspects of LBD research to target the many needs identified by individuals and families living with LBD.

Original languageEnglish (US)
Pages (from-to)50-58
Number of pages9
JournalAlzheimer disease and associated disorders
Issue number1
StatePublished - Jan 1 2023


  • Lewy body dementia
  • caregiving
  • community engagement
  • research priorities
  • survey

ASJC Scopus subject areas

  • Clinical Psychology
  • Gerontology
  • Geriatrics and Gerontology
  • Psychiatry and Mental health


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