Association for Public Policy Analysis & Management

Too many family caregivers experience a variety of negative outcomes, including economic insecurity and poor physical and mental health. Family caregiving refers to the provision of unpaid assistance and logistical, material, and emotional support to family or community members with physical, psychological, or developmental needs (Drentea, 2007). Caregivers provide physical and instrumental aide to care-recipients (Montgomery et al., 1985), i.e. paying the daily rate for a respite care program, or spending a certain number of hours per day performing specific tasks. These tasks are referred to as activities of daily living (ADLs), and include transferring, bathing, dressing, grooming, feeding, and toileting, managing finances, transportation, meal preparation, home maintenance, shopping, and medication.

An estimated 43.5 million people in the United States provide care to an adult or child each year (AARP, 2015). The economic value of services provided by unpaid caregivers has been rising steadily, reaching an estimated $470 billion in 2013 (Reinhard, 2015). For the typical caregiver, the average cost in terms of lost wages, pension, and Social Security benefits is $324,044; this total cost on a national scale is an estimated $3 trillion (MetLife Mature Market Institute, 2011). Other costs to caregivers include poor physical and mental health, loss of productivity, and time spent on the coordination of logistics (Hopps et al, 2017).

A review of the literature reveals that information about family caregiving has been collected primarily through data which aim to capture the physical, emotional, social, and financial costs of caregiving, and which usually rely on either task- or time-based metrics. Stakeholders use various social, behavioral, and economic theories to explain the prevalence and incidence of caregiver burden, defined as the extent to which caregivers perceive that caregiving has had an adverse effect on their emotional, social, financial, and physical functioning (Adelman et al, 2014).

Policy makers and politicians have historically understood the provision of care to be a private issue, carried out primarily within individual family systems. Evidence suggests these interventions have been only moderately successful in helping families cope with the demands of caregiving (Proulx & Snyder, 2009). Available data support the need for interventions that address the intersection of caregiving and other forms of labor in order to improve the negative outcomes that employed caregivers frequently experience; to improve caregivers’ access to supportive services and programs (Pitsenberger, 2006); to move beyond temporary service provision to community-wide capacity building initiatives; to coordinate more effective management training; and to consistently implement labor policies that support employed family caregivers (Gaugler et al, 2008).

Current policies under consideration to support family caregivers include a national Care Corps; the dispensation of Social Security credits for time spent on caregiving; and the expansion of the Family and Medical Leave Act (FMLA) to offer paid family leave through a payroll tax deduction (Hunt and Reinhard, 2015). Proposed recommendations represent innovation in the provision of healthcare, and are largely based on a shift to better reflect the experiences of caregivers, and offer models for the sustainable provision of care.