The Caregiver Burden of Delirium in Older Adults With Alzheimer Disease and Related Disorders

Abstract

Objectives: To measure the burden of delirium in older adults with or without Alzheimer disease or related disorders (ADRD) Design: Prospective, observational cohort Setting: Inpatient hospital, study participants’ homes Participants: A subset (n=267) of older medical and surgical patients and their caregivers enrolled in the Better Assessment of Illness (BASIL) study Measurements: Delirium burden was measured using the DEL-B instrument (range 0-40, higher scores indicate greater burden) in caregivers (DEL-B-C) and patients (DEL-B-P) one-month after hospitalization. Severity of cognitive impairment (Montreal Cognitive Assessment, MoCA), delirium presence (Confusion Assessment Method, CAM) and delirium severity (CAM-Severity, CAM-S) were measured during hospitalization and at one-month followup. ADRD diagnosis was determined by a clinical consensus process. Results: For patients with (n=56) and without (n=211) ADRD, both DEL-B instruments had good internal consistency. DEL-B-C scores had a median (interquartile range, IQR) among caregivers of patients with and without ADRD of 9 (5-15) and 5 (1-11), respectively (p<0.05). If the patient developed delirium, caregivers experienced greater burden (β[delirium×ADRD]=−0.29, p=.42), regardless of ADRD status. Further, caregiver burden was modestly correlated with patient MoCA scores (Spearman correlation coefficient, rho=−.18, p=.01). Patients with ADRD who developed delirium self-reported less burden than those without ADRD (β[delirium×ADRD]=−0.67, p=.044). As with caregivers, delirium burden was modestly correlated with patient MoCA score (rho=−.18, p=.005) and correlated with the CAM-S in patients without ADRD (rho=.38, p<.001) but not for patients with ADRD (rho=−.07, p=.61). Conclusions: Delirium resulted in the same degree of increased caregiver burden regardless of whether or not a patient had ADRD, signifying delirium is equally stressful to caregivers, even among those with experience caring for someone with a chronic cognitive disorder. Delirium burden is only modestly associated with degree of cognitive impairment, suggesting that other aspects of delirium contribute to burden.

A core outcome set for studies evaluating interventions to prevent and/or treat delirium for adults requiring an acute care hospital admission: an international key stakeholder informed consensus study

“…Emotional distress at the time of delirium may manifest as psychomotor agitation, an outcome that was ranked highly in the Delphi rounds despite being voted out of the final COS. Emotional distress and burden to family members is also substantial [ 40 ]; however, researcher participants in our study, in particular, rated this outcome as unimportant for COS inclusion. However, the COS represents the minimum set of outcomes recommended for inclusion in all studies; hence, these outcomes can be included in future studies despite not included in the final COS.…”

One‐year Medicare costs associated with delirium in older hospitalized patients with and without Alzheimer's disease dementia and related disorders

“…All participants in the original cohort (n = 352) were determined to have ADRD or no ADRD at study enrollment according to a previously published clinical consensus process. 32 It is important to note that ADRD status in this study was not based on codes or diagnoses from claims data. We assigned a diagnosis of probable dementia if a participant met any of the following criteria: (1) IQCODE ≥3.2;…”

Longitudinal validation of an electronic health record delirium prediction model applied at admission in COVID-19 patients

“…Delirium is associated with a wide range of adverse outcomes including increased critical care utilization, longer length of stay, increased rate of institutional discharge, worse functional outcomes, increased rate of readmission, and increased mortality [ [13] , [14] , [15] , [16] , [17] , [18] , [19] , [20] , [21] , [22] , [23] , [24] , [25] , [26] , [27] , [28] , [29] , [30] , [31] , [32] , [33] , [34] ]. In addition to poorer clinical outcomes, care of patients with delirium is associated with greater caregiver and clinician burden [ [35] , [36] , [37] , [38] , [39] , [40] , [41] , [42] ]. Fortunately, delirium can be prevented through multicomponent interventions [ [43] , [44] , [45] , [46] , [47] ]; however, optimal allocation of these multicomponent prevention resources, as with any other scarce resource, requires a way of identifying individuals at greatest risk for experiencing delirium [ 48 ].…”