Abstract
BackgroundAgitation is a common neuropsychiatric symptom of Alzheimer's disease; however, limited information exists on how measurable changes in agitated behaviors relate to overall caregiver experience. We sought to describe agitated behaviors measured by the Cohen-Mansfield Agitation Inventory (CMAI) score among individuals with Alzheimer's disease living in US community-based settings and experience of their caregivers.MethodsAn online survey was conducted (08/26/2021-09/24/2021) among adult caregivers who lived with and provided unpaid care for an individual with Alzheimer's disease. The 3-part survey involved (1) informed consent and screening; (2) CMAI assessment (total and sub-scores for four agitation factors); (3) characteristics and outcomes of caregivers and individuals with Alzheimer's disease. Descriptive statistics are reported. Association between the CMAI total score and caregiver burden (measured using the Zarit Burden Interview), mental health (measured using the Patient Health Questionnaire 4-item), and work/activity impairment (measured using the Work Productivity and Activity Impairment: Caregiver scale) was estimated using regression models.ResultsA total of 250 caregivers (mean age: 44.5 years; 55.2% male; 86.4% White) completed the survey. Based on the CMAI, 99.6% of individuals with Alzheimer's disease (mean age: 68.6 years; 55.2% male; 83.2% White) experienced ≥1 agitated behavior in the past 2 weeks. Caregivers reported providing an average of 39.1 hours of care per week for individuals with Alzheimer's disease (additional non-paid and paid care provided by other caregivers was 58.8% and 38.4%, respectively); 60.8% of caregivers had a high caregiving burden, 35.2% experienced moderate-to-severe distress, and 68.2/64.0% had impairment in work/daily activities. Agitation among individuals with Alzheimer's disease was associated with significantly poorer caregiver outcomes.ConclusionsIndividuals with Alzheimer's disease frequently experience several different agitated behaviors. Effective management of agitated behaviors is important and has the potential to improve the overall caregiver experience.