This report profiles the role and experiences of informal caregivers for the older population, using a new resource that provides a more complete picture of informal caregiving than possible with surveys that rely solely on either care-recipient-reported or caregiver-reported information. NSOC, a supplement to the 2011 NHATS, is unique in interviewing all informal caregivers for a well-defined population of persons age 65 or older receiving assistance with daily activities.
NSOC respondents are asked about a broad set of types of assistance beyond the traditional household (IADL) and self-care or mobility (ADL) tasks, ranging from transportation assistance to help with health or medical tasks. This breadth allows a better understanding of the full range of supports informal caregivers provide and areas other than explicit long-term supportive care where they are making contributions. Information collected about positive and negative aspects of caregiving, health, and indicators of subjective well-being allows exploration of how gains and burdens differ by caregiver and care-recipient characteristics and by the intensity of care provided.
We find in all, 18 million informal caregivers provided 1.3 billion hours of care on a monthly basis in 2011 to the more than 9 million older adults receiving informal assistance (Freedman & Spillman 2013). Five key findings about caregivers and the care they provide are especially noteworthy:
- Consistent with prior studies, family members are the main source of informal care: one in five caregivers are spouses who provide nearly one-third of the aggregate hours, and about half are daughters or sons, who together provide nearly half of aggregate hours.
- Hours are concentrated among caregivers of high need recipients: nearly half of aggregate hours are provided by a minority (31%) of caregivers who assist recipients receiving help with at least three self-care or mobility tasks and 40% of aggregate hours are provided by the 33% of caregivers who assist persons with probable dementia
- On average, informal caregivers provided 75 hours of care per month, but average hours of care provided varies widely by the number and types of tasks for which assistance is given, caregivers’ relationship to care-recipient, their age, as well as the caregiver’s work and family status. For example, spouses and other caregivers who lived with the care-recipient provided the highest hours of care--110 and 114, respectively, per month.
- The most common domains of assistance were household activities (95%), transportation (nine in ten), health system interactions (eight in ten), self-care and mobility activities (three-quarters) and health care-related tasks (almost 60%). The latter includes a variety of activities including giving injections or helping with ostomy care.
- Regardless of recipient level of assistance, those assisting recipients with tasks in all domains of care in which they receive help provide twice the hours of those who specialize in a subset of activities (on average 87 hours vs. 39 hours); among caregivers to recipients reporting help with 3+ self-care/mobility activities, those helping with all tasks provided an average of 131 hours in the last month compared with 50 hours for those not helping with all tasks.
This reported also highlighted both positive and negative aspects of caregiving.
- Two-thirds of caregivers report substantial gains from caregiving, most commonly confidence that the recipient is well cared for (86%) and feeling closer to the recipient (69%). Conversely, only 10% report substantial negative aspects of caregiving overall, but larger proportions reported having more to do than they can handle (17%), being exhausted by the end of the day (16%), and lacking time for themselves (15%); 63% reported little or no negative aspects.
- The proportion of caregivers perceiving substantial negative aspects varied relatively modestly across caregiver characteristics but substantially by care-recipient characteristics, intensity of care, and caregiver health. While the direction of effects cannot be measured in a cross-sectional analysis, it is of note, that caregivers reporting depression, anxiety, and greater severity of physical symptoms and impairments were dramatically more likely to report substantial negative aspects of caregiving.
There are a number of ways in which these estimates differ from--and in some ways improve upon--the existing literature. In particular, estimates are not comparable to prior estimates from the NLTCS and ICS, the only previous nationally representative survey of the older population to conduct interviews with caregivers to a well-defined population of older adults with disabilities. The most obvious differences are that NHATS/NSOC uses a broader definition than NLTCS/ICS to capture both older persons with care needs and their care providers (Freedman et al. 2013). In particular, the focus of the NLTCS/ICS on “primary” informal caregivers, rather than all informal caregivers, leads to exclusive attention on the experience of the informal caregiver who was most involved. NSOC’s design also differs from the Health and Retirement Study, which allows estimates of ADL and IADL care reported by sample members ages 65 and older (and care provided to parents of sample members ages 51 and older), but does not include a follow-up study to interview caregivers about the care they provide, the caregiving experience, and their health and well-being.
Despite NSOC’s unique design, key findings are consistent with those previously reported in the literature (Johnson & Wiener 2006; Spillman 2009; Spillman & Black 2005). In particular, we find that family members, particularly spouses and daughters are playing a substantial role in providing uncompensated care to older adults, and that for some groups the demands of caregiving are large, especially for those who live with the care-recipient or have health problems of their own. Moreover, NSOC’s estimate of an average 75 hours of care in the past month, implying an about 17 hours per week, is on par with (albeit on the lower end of) previous findings, which suggest a range from 17 hours to 25 hours per week, depending on the source (Gibson & Houser 2007). Such findings reinforce that NSOC captures a broader pool of caregivers providing a wider range of levels of care than typically captured by national surveys of older adults.
This report adds to the literature in important ways. Our findings substantiate recent reports indicating that informal caregivers commonly provide assistance with a wide range of medically-oriented tasks as well as interacting with providers and helping the older population navigate the broader health system. Most caregivers do not view their care responsibilities as burdensome. The majority of caregivers report positive consequences and few report substantial negative consequences. Higher levels of both positive and negative aspects of caregiving were associated with greater engagement in caregiving. Negative reports are, however, more likely to be observed for caregivers who provide high levels of care, who assist individuals with probable dementia, and who have worse health status and physical symptoms themselves. As is true for all cross-sectional estimates, the associations we find cannot be interpreted as causal relationships. This is particularly true because of the complex inter-relationships between the hours of care provided, caregiver health, participation restrictions, and perception of caregiving burden. Cross-sectional estimates also cannot reveal, for example, whether informal caregivers working less than full-time provide more hours of care than others workers because they have more hours available or because their caregiving necessitated a reduced work schedule.
Finding ways to support informal caregivers in their traditional roles as well as their expanded role in providing and managing health care for the older population continues to be an important policy goal, as the older population increases and the shift in the locus of care from nursing homes to community and other alternative supportive settings continues (Freedman et al. 2013; Spillman 2011). Both the ACL and national plan developed under the National Alzheimer’s Project Act of 2012 recognize the need to support informal caregivers as an essential part of the workforce for maintaining the well-being and health of the older population (HHS 2013). The NSOC can contribute to the knowledge base for these efforts by providing a baseline for further studies examining the dynamics of caregiving and care networks as the NHATS cohort is followed through subsequent annual waves.