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

ABSTRACT:

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 symp

SUBMITTER: Holden SK 

PROVIDER: S-EPMC9971616 | biostudies-literature | 2023 Jan-Mar 01

REPOSITORIES: biostudies-literature