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Experiences of Caregivers as Study Partners in Dementia Research

Geriatric Psychiatry Program | Division of Geriatric Psychiatry and Neuropsychiatry

Research that involves people with Alzheimer disease and other dementias usually requires each subject to have a study partner to serve as an informant for the cognitively impaired research participant.  While study partners (usually family members, often caregivers) may or may not also be subjects in the research study, these individuals are critical to the dementia research process by fulfilling responsibilities that often go beyond that of an informant, for example, providing transportation.  This empirical qualitative research study examines how study partners are involved in dementia research to understand their role, responsibilities, and potential ethical challenges from the perspectives of study partners and researchers.  This work is a prospective research ethics study that is part of a grant funded by the National Institutes of Health Office of the Director and the National Institute on Aging, titled “Ethical Issues in Dementia Research Involving Surrogates and Study Partners” (R01AG038440).

For more information, contact Betty Black, Ph.D., Principal Investigator; 410-955-2003; bblack@jhmi.edu