Caregiver policies in the United States: a systematic review

Abstract

In the United States, there are nearly 53 million informal or unpaid caregivers, many of whom experience mental and physical stress related to their caregiving duties and increased financial responsibility. We identified federal and state informal caregiver support policies authorized by specific legislation along with their key provisions and conducted a systematic review of the academic literature related to quantitative evaluations of these policies. Twenty policies, eight academic studies, and four gray literature reports were included in the study, with half of the policies introduced since 2000. Our study criteria yielded few academic valuations tied to caregiver policies and few policies including research provisions. Of the provision areas identified in policies, respite services, caregiver training, and workplace protections appeared the most. Future policies and the studies examining them should incorporate cost outcomes and equity as focus areas and disaggregate data by vulnerable groups to ensure value and equity in caregiver support legislation. KEY MESSAGES: Increased legislation to support informal caregivers may be warranted. The limited academic research examining existing caregiver policies identifies mixed outcomes for caregivers. Prioritizing vulnerable populations in such policy research examining outcomes could help improve caregiver support efforts. The included studies investigated the outcomes of three policies and identified more negative than positive outcomes for caregivers.

Keywords: Caregiver support; Informal caregiving; Public policy; Serious illness.