Unmet Needs of Caregivers of Individuals Referred to a Dementia Care Program

Objectives To characterize caregiver strain, depressive symptoms, and self‐efficacy for managing dementia‐related problems and the relationship between these and referring provider type. Design Cross‐sectional observational cohort. Setting Urban academic medical center. Participants Caregivers of community‐dwelling adults with dementia referred to a dementia care management program. Measurements Caregivers were surveyed and completed the Patient Health Questionnaire ( PHQ ‐9) about themselves; the Modified Caregiver Strain Index; the Neuropsychiatric Inventory Questionnaire, which measures patient symptom severity and related caregiver distress; and a nine‐item caregiver self‐efficacy scale developed for the study. Results Of 307 patient–caregiver dyads surveyed over a 1‐year period, 32% of caregivers reported confidence in managing dementia‐related problems, 19% knew how to access community services to help provide care, and 28% agreed that the individual's provider helped them work through dementia care problems. Thirty‐eight percent reported high levels of caregiver strain, and 15% reported moderate to severe depressive symptoms. Caregivers of individuals referred by geriatricians more often reported having a healthcare professional to help work through dementia care problems than those referred by internists, family physicians, or other specialists, but self‐efficacy did not differ. Low caregiver self‐efficacy was associated with higher caregiver strain, more caregiver depressive symptoms, and caring for an individual with more‐severe behavioral symptoms. Conclusion Most caregivers perceived inadequate support from the individual's provider in managing dementia‐related problems, reported strain, and had low confidence in managing caregiving. New models of care are needed to address the complex care needs of individuals with dementia and their caregivers.