Like the predecessor surveys, the National Long-Term Care Survey (NLTCS) and its companion Informal Caregiving Supplement (ICS), the NHATS and NSOC are unique in providing nationally representative information reported by informal caregivers for a well-characterized population-based sample of older adults. In addition, the baseline NSOC has the distinction of interviewing the entire informal caregiver network, rather than only the “primary caregiver” interviewed in the ICS. These unique characteristics of the combined NHATS and NSOC data allow a more comprehensive understanding of the context, scope of activities, and implications of informal caregiving for the older population than is possible with surveys that rely solely on either care-recipient-reported or caregiver-reported information. The NSOC design draws on a substantial literature on the scope, nature, and consequences of informal caregiving.
Despite variability in the estimated numbers of family caregivers to older adults across national surveys (Giovannetti & Wolff 2010), there is remarkable consistency that informal caregivers of older adults are predominantly middle-aged daughters and spouses (Wolff & Kasper 2006; Johnson & Wiener 2006; Spillman & Black 2005; Spillman & Pezzin 2000; Stone & Kemper 1989). Although there is growing recognition of the unique challenges posed by distance caregiving (Bevan et al. 2012), evidence suggests caregivers and recipients typically live together or within close proximity (Wolff & Kasper 2006; Johnson & Wiener 2006; Spillman & Pezzin 2000). Approximately half of informal caregivers work for pay, but employment rates vary widely by relationship and are generally higher among adult child (versus spouse) caregivers, (Pinquart & Sorensen 2011; Wolff & Kasper 2006) and among caregivers who provide a less intensive level of supportive assistance as part of a larger helping network (Johnson & Wiener 2006; Spillman & Pezzin 2000).
Informal caregivers provide assistance with diverse health-related activities that span daily personal care activities such as eating and bathing, household management activities such as shopping and meal preparation, self-management activities such as managing prescribed medications, navigating health system demands such as attending medical encounters, and financial activities such as handling insurance and bills (IOM 2008). The emphasis on informal caregiving historically has focused on assistance with personal care and household activities (Katz et al. 1963; Lawton & Brody 1969; Stone, Cafferata & Sangl 1987). However, recent emerging evidence demonstrates that family members also are often involved in managing complex health care activities at home (Reinhard, Levine & Samis 2012; IOM 2008; Donelan et al. 2002), as well as in directly navigating the demands of health care system and transitions between settings of care (Levine et al. 2010; Wolff & Roter 2008).
The caregiving experience is shaped by multiple diverse factors that may affect reactions, such as perception of burden or rewards from caregiving. The balance of positive and negative aspects may affect the likelihood of adverse outcomes such as cessation of caregiving or institutionalization of the care-recipient. Factors affecting the experience of caregivers include the nature and severity of older adults’ underlying disability and specific health conditions (Pinquart & Sorensen 2007; Roth et al. 2009), the types of caregiving tasks, the intensity of caregiving (Pearlin et al. 1990; Zarit et al. 2010), the nature of the relationship between the informal caregiver and the care-recipient (Pearlin et al. 1990; Pinquart & Sorensen 2011), and competing work and child care responsibilities (Pearlin et al. 1990; Spillman & Pezzin 2000). Informal caregivers who regularly provide “high intensity” help in terms of greater hours of care and assistance with activities of daily living (ADLs) are more likely to experience burden and strain (Chappell & Reid 2002). Other family caregivers experience elevated stress (Kiecolt-Glaser et al. 2003; Vitaliano, Zhang & Scanlan 2003), physical or psychological illness (Emanuel et al. 2000; Pinquart & Sorensen 2003; Roth et al. 2009), or economic impacts, including cessation of work (Schulz et al. 2003; Covinsky et al. 2001). On the other hand, many informal caregivers cope well and derive personal reward from their role (Freedman et al. 2014; Beach et al. 2000; Kramer 1997; Stuckey, Neundorfer & Smyth 1996).