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Patients and families who experience delirium report more distress than those who do not.

BOSTON — Researchers from Hebrew SeniorLife’s Hinda and Arthur Marcus Institute for Aging Research, Beth Israel Deaconess Medical Center, Harvard Medical School, Brown University, and Yale School of Nursing have reported that patients who develop delirium (an acute decline of cognitive functioning) during or after a hospital stay report more distress than those who do not. The same goes for family members of patients who have experienced delirium – they also report more distress than family members of patients who have not experienced delirium.

To uncover these results, scientists administered the Delirium Burden (DEL-B) questionnaire to measure and study the distress caused by delirium in both patients and their families. They then weighed these results against questionnaires from patients and families who did not experience an episode of delirium. Researchers also found that caregivers experienced more distress when their loved one developed delirium than the patient themselves. Beyond this, they discovered that the severity of the delirium episode may also play a role in the amount of distress caused. The results of this study were published today in The Gerontologist.

Annie Racine, PhD, Postdoctoral Research Fellow at the Marcus Institute and first author of the study said, “We’ve known for some time that delirium is often a distressing experience for patients and their caregivers, but we haven’t previously had a reliable and validated way to measure or quantify that experience”. Sharon Inouye, MD, MPH, Director of the Aging Brain Center at the Marcus Institute and senior author of the paper added, “These DEL-B questionnaires are an important step for the field, enabling measurement of the lived experience of delirium. We hope these instruments will help clinicians and researchers identify ways to make delirium less distressing both for patients and their families.”

In response to this study, the authors suggest that an important goal going forward would be to understand which parts of the delirium experience make it so distressing, and find ways to improve the experience for patients and family members alike. The DEL-B questionnaire could be an important tool in subsequent clinical trials to help find solutions to the distress caused by delirium.

Research reported in this publication was supported by the National Institute on Aging of the National Institutes of Health under Award Numbers R01AG044518, R24AG054259, K07AG041835, P01AG031730, R01AG030618, K24AG035075, and T32AG023480. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health."

About Marcus Institute

Scientists at the Institute for Aging Research seek to transform the human experience of aging by conducting research that will ensure a life of health, dignity and productivity into advanced age. The Institute carries out rigorous studies that discover the mechanisms of age-related disease and disability; lead to the prevention, treatment and cure of disease; advance the standard of care for older people; and inform public decision-making. The Musculoskeletal Center within Marcus Institute studies conditions affecting bone, muscle, and joint health with aging.

About Hebrew SeniorLife

Hebrew SeniorLife, an affiliate of Harvard Medical School, is a national senior services leader uniquely dedicated to rethinking, researching and redefining the possibilities of aging. Based in Boston, the non-profit, non-sectarian organization has provided communities and health care for seniors, research into aging, and education for geriatric care providers since 1903. For more information about Hebrew SeniorLife, visit, follow us on Twitter @H_SeniorLife, like us on Facebook or read our blog.