New tests aim to support improvements in care for those dealing with delirium
Delirium—an acute decline in cognition and attention affecting more than 7 million hospitalized Americans every year—takes a significant toll on older adults and family caregivers. To better understand this burden, NIA-funded researchers developed and tested questionnaires that measure factors such as awareness of symptoms, situational stress, and emotional response. The results, published online May 8 in The Gerontologist, may provide a first step toward improving the experience of those affected by delirium.
To develop a way to assess delirium burden, researchers led by Sharon Inouye, M.D., Harvard Medical School and Hebrew SeniorLife, Boston, consulted with a cross-disciplinary panel including experts from critical care, geriatrics, neurology, nursing, occupational therapy, and psychiatry. They created Patient Delirium Burden and Family Caregiver Delirium Burden instruments. Each instrument consists of eight two-part questions, first asking about the presence of a certain delirium feature, such as disorientation, memory problems, or personality changes, and then gauging how distressing the experience was.
More than 240 patients (average age, 80 years) and more than 200 family caregivers participated in testing the instruments. Caregivers completed a 2- to 3-minute assessment in the hospital and again one month after discharge. Patients completed only a post-discharge assessment because their responses during active delirium would be unreliable.
Ratings of distress were higher after discharge for people who experienced delirium in the hospital compared with those who did not, the researchers found. In addition, higher delirium severity was correlated with higher delirium burden for both patients and family caregivers.
Patients and caregivers experienced delirium differently. Consistent with previous studies, caregivers’ distress was significantly higher on average than patients’, suggesting a higher burden for caregivers but also patients’ inability to recall events due to delirium or cognitive impairment.
Additionally, caregivers’ scores were modestly higher one month after discharge compared with their scores during hospitalization, which could be because of factors such as the physical demands of caregiving. The researchers noted that the continuing burden of delirium after discharge for patients and family caregivers suggests a need for ongoing support both during and after hospital stays.
Further studies to validate these delirium-specific instruments are needed to examine their ability to predict outcomes such as quality of life and healthcare costs, and to see if they apply to other study populations and care settings.
For more information, visit the Hospital Elder Life Program website to view the delirium burden instruments.
Reference: Racine AM, et al. Delirium burden in patients and family caregivers: Development and testing of new instruments. The Gerontologist. 2018 May 8. doi: 10.1093/geront/gny041. [Epub ahead of print]