The economic cost of dependency and underlying medical conditions at older ages are large and projected to grow rapidly as the number of older adults continues to increase in the coming decades (Johnson & Wiener 2006). In addition, reduced well-being for individuals facing loss of functioning and for their families, who provide the bulk of uncompensated care, are important societal concerns. A number of ongoing trends make in-depth study of disability and care arrangements critically important.
First, disability trends continue to change. Previous national studies yield a wide range of activity limitation estimates for the older population, ranging from 13%-32% depending on definition and source (Freedman et al. 2013). For most definitions, during the 1980s and 1990s, the percentage of older adults with activity limitations fell (Freedman et al. 2004; Spillman 2012; Wolf & Knickman 2005), although recent studies suggest the trend has leveled off and may reverse as the Baby Boom generation continues to age (Freedman et al. 2013, Lin et al. 2012, Kaye et al. 2013). Some have suggested increases in obesity and a slowdown of gains from education as reasons to be pessimistic about a continued downward trajectory (Sturm et al. 2004; Freedman & Martin 1999). On the other hand, studies suggest the use of assistive devices has increased among older adults (Freedman et al. 2006; Spillman 2005), potentially alleviating the need for assistance for some older adults (Agree et al. 2005; Allen et al. 2001).
A second major set of trends relate to families of older adults. The family has long been the major provider of care to older adults, but the number of potential family caregivers has been declining. In addition, societal trends toward delayed childbearing and increased female labor-force participation continue to place competing demands on potential family caregivers’ time. Spillman & Pezzin (2000), for instance, found that increasing demands confronting family caregivers and higher disability levels among those receiving care contributed to growing reliance on paid caregivers between 1984 and 1994. A subsequent analysis found, however, that use of paid care declined dramatically between 1994 and 1999, after the transition to prospective payment for Medicare home health, while family caregiving remained stable (Spillman & Black 2005). As a result, the proportion relying only on informal caregivers increased. Certainly, the potential and actual caregiving landscape, how paid arrangements are evolving, and how families complement residential care arrangements are important to investigate as the Baby Boom enters late life.
A third important development relates to shifts in residential care settings for older adults, which continue to increase as long-term nursing home use continues to decline (Spillman, Liu & McGuilliard 2002; Spillman & Black 2006). The 2010 National Survey of Residential Care Facilities, a provider-based survey of state-regulated residential care facilities with four or more beds and primarily serving adults indicates nearly 1 million beds serving about 650,000 residents age 65 or older (Park-Lee et al. 2011; Caffrey et al. 2012). Using a more inclusive definition of places confirmed by a facility respondent, National Health and Aging Trends Study (NHATS) identified 2 million older adults living in either assisted or independent living within a residential care setting in 2011 (Freedman & Spillman 2013). Relatively little is known about the service profile available to and used by older adults in these settings or the extent to which informal and formal caregivers from outside the place provide assistance (in addition to services provided by paid staff).
Finally, concerns about whether the needs of older adults with limitations are being appropriately met are not new, but as settings diversify and concern about availability of family caregivers increase, interest in this topic has re-emerged. About one in five older people with activity of daily living (ADL) limitations report that they need more help than they receive (Desai et al. 2001; Spillman 2013). Among the adverse consequences of reported unmet need are falls, burns, inadequate nutrition, incontinence, missing physician appointments, depression, hospitalization, and emergency room use (Allen & Mor 1997; Desai et al. 2001; LaPlante et al. 2004; Komisar et al. 2005; Sands et al. 2006). As disability and care availability continue to shift, it is important to track how older adults’ care needs are currently being met.
Much of what we understand about disability at the national level is from the 1982-2004 National Long-Term Care Survey (NLTCS). The NLTCS screened older adults who were eligible for Medicare to identify those with suspected disability and followed up with an in-depth in-person interview, with a focus on ADLs and instrumental activities of daily living (IADLs). In 2011, the National Institute on Aging launched the successor to the NLTCS, which was NHATS. Like NLTCS, NHATS includes older individuals irrespective of where they live (i.e., in the community, residential care settings, or nursing homes) and follows sample members over time. However, NHATS eliminated screening, updated content areas, and re-engineered how functional information is collected with the goal of capturing a more nuanced picture of late-life functioning and disability.
The purpose of this report is to describe disability and care needs of the older population using NHATS’ baseline (2011) measures. To provide a context for framing policy discussions of disability and care needs of older adults, we investigate two overarching topics. (1) Activity Limitations and Assistance. We begin by estimating the number of older adults with activity limitations and the distribution of the population by level of assistance and the demographic profile of older adults who receive assistance with activities. (2) Care Resources for Older Adults with Limitations and Unmet Needs. Next, we describe the size and composition of the potential and actual care networks of older adults and the number of hours of care received by level of assistance. For older adults living in residential care settings, we present estimates of the availability and use of various services, including non-staff paid and unpaid help. Finally, we provide estimates of unmet need, overall and by levels of assistance, composition of the care network, and residential setting.