Distress Associated with Dementia-Related Psychosis and Agitation in Relation to Healthcare Utilization and Costs

Objectives Explore the relationship between behavioral and psychological symptoms of dementia (BPSD; specifically, delusions, hallucinations, and agitation/aggression) and associated caregiver distress with emergency department (ED) utilization, inpatient hospitalization, and expenditures for direct medical care. Design/Setting/Participants Retrospective cross-sectional cohort of participants with dementia (N = 332) and informants from the Aging, Demographics, and Memory Study, a nationally representative survey of U.S. adults >70 years old. Measurements BPSD of interest and associated informant distress (trichotomized as none/low/high) were assessed using the Neuropsychiatric Inventory (NPI). Outcomes were determined from one year of Medicare claims and examined according to presence of BPSD and associated informant distress, adjusting for participant demographics, dementia severity, and comorbidity. Results Fifty-eight (15%) participants with dementia had clinically significant delusions, hallucinations, or agitation/aggression. ED visits, inpatient admissions, and costs were not significantly higher among the group with significant BPSD. In fully adjusted models, a high level of informant distress was associated with all outcomes: ED visit incident rate ratio (IRR) 3.03 (95% CI: 1.98–4.63; p < 0.001), hospitalization IRR 2.78 (95% CI: 1.73–4.46; p < 0.001), and relative cost ratio 2.00 (95% CI: 1.12–3.59; p = 0.02). Conclusions A high level of informant distress related to participant BPSD, rather than the symptoms themselves, was associated with increased healthcare utilization and costs. Effectively identifying, educating, and supporting distressed caregivers may help reduce excess healthcare utilization for the growing number of older adults with dementia.