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

Published Web Location

https://doi.org/10.1111/jgs.13251
Abstract

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.

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