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Correspondence: Address correspondence to Jennifer L. Wolff, PhD, Assistant Professor, Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, 624 N. Broadway, Room 692, Baltimore, MD 21205. E-mail: jwolff{at}jhsph.edu
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Abstract |
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Key Words: Family caregiving • Informal caregiving • Long-term care • Disability
At this juncture there is a particularly great need for comprehensive information about caregivers to older adults. First, increases in longevity (Federal Interagency Forum on Aging-Related Statistics, 2004), declining household size (U.S. Census Bureau, 2005), and a general shortage of direct health care workers (Buerhaus, Staiger, & Auerbach, 2000) collectively point to fewer caregivers for growing numbers of older adults in the coming years. Recent reports of declines in unpaid assistance and greater reliance on paid help (Liu, Manton, & Aragon, 2000; Spillman & Pezzin, 2000) underscore the practical implications of this issue. Moreover, estimates of the economic value provided by family caregivers range from $45 billion to more than $200 billion annually (U.S. Department of Health and Human Services [DHHS], 1998; Arno, Levine, & Memmott, 1999) and highlight potential financial consequences to society should the efforts of family caregivers be increasingly replaced with paid assistance.
A broad understanding of caregiver circumstances also is essential to monitoring the effects of relevant policy and legislation. For example, changes to Medicare's acute and postacute reimbursement have created incentives to discharge medically complex patients back to the community (and, therefore, to their caregivers) "quicker and sicker." The 1990 Americans with Disabilities Act and the later Supreme Court Olmstead v. LC (1999) ruling represent a broad societal shift toward "rebalancing" the long-term-care system to reduce institutional care and shift resources to community settings. Related federal initiatives, such as New Freedom and the National Family Caregiver Support Program, have implications for family caregivers (Feinberg & Newman, 2004; Rosenbaum, 2001), yet without empirical data it is impossible to monitor the collective impact of these programs.
Recent studies have drawn on the NLTCS to examine issues related to disability and personal care; however, these studies have largely examined the changing dynamics of disability, or the totality of assistance received by recipients (Liu et al., 2000; Manton & Gu, 2001; Spillman & Pezzin, 2000; Stone & Kemper, 1989). This study is unique in that its focus is on caregivers to disabled older adults. Our goal is to describe, for the two time periods of 1989 and 1999, the composition of disabled older adults' primary informal caregivers, including their sociodemographic characteristics; the intensity, frequency, duration, and scope of assistance they provide; the provision of help from others; the competing demands for their time; and the recipients to whom they provide assistance.
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Methods |
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The Informal Caregiver Survey was conducted among informal primary caregivers to community-dwelling NLTCS participants in 1982, 1989, and 1999. Eligible caregivers included relatives or unpaid nonrelatives who had provided one or more hours of help to NLTCS participants with ADL or IADL activities in the week prior to the community interview. When more than one helper met eligibility criteria, the primary caregiver was designated as the helper who provided the greatest number of hours of ADL assistance to the participant in the previous week, or if no ADL help was provided, the helper who provided the greatest hours of help with IADL tasks. Primary caregivers were questioned on a variety of topics, including the nature and intensity of help provided to recipients, help provided by others, perceptions of their role in providing help, living arrangements, employment, and income.
Ideally, in our analyses we would have drawn on all three waves of the Informal Caregiver Survey, but several modifications to its design impede comparisons between the 1982 survey and later waves. Most notably, the 1982 Informal Caregiver Survey was restricted to ADL caregivers (i.e., IADL caregivers were excluded), but it included both primary and secondary ADL caregivers. The 1989 and 1999 waves included both ADL and IADL caregivers, but these waves were restricted to primary caregivers (i.e., secondary caregivers were excluded). For these reasons, our analyses focus on a comparison of the 1989 and 1999 surveys.
Study Populations: Defining Disabled Elderly Care Recipients and Their Primary Caregivers
Comparisons across the 1989 and 1999 waves necessitate careful attention to the construction of comparable study samples. One consideration for cross-wave comparisons is that the 1989 Informal Caregiver Survey targeted eligible caregivers only for a subsample of NLTCS participants. Specifically, in 1989, a subsample of all participants who were screened (6,701 of 17,565 individuals) was designated as the sample from which Informal Caregiver Survey interview participants would be drawn (pending eligibility). Given our interest in making comparisons between 1989 and 1999, it was important for us to comprehensively understand sampling strategies employed by the NLTCS and Informal Caregiver Survey across the two time periods. To evaluate and address potential threats to study-sample comparability, we undertook a careful review of pertinent issues.
In this study, we identified chronically disabled care recipients as individuals who both (a) screened into the NLTCS as chronically disabled and (b) indicated that they received active or standby help with at least one ADL activity (eating, bathing, dressing, toileting, transferring, and moving about indoors), or received help with at least one IADL task (grocery shopping, transportation, laundry, light housework, money management, meal preparation, telephone use, medication management, and outdoor mobility) that they could not perform as a result of a health problem or disability. We specified these criteria because a proportion of Informal Caregiver Survey respondents indicated providing assistance to individuals who were not identified as chronically disabled in the NLTCS screener interview. Additionally, the Informal Caregiver Survey eligibility criteria did not distinguish the reason caregivers provided assistance, and some Informal Caregiver Survey respondents were helping NLTCS participants for reasons other than a health problem or disability. Failing to clearly specify chronic disability and the underlying reason for help in defining the recipients of care could impede consistency in study-sample selection across years.
For the purposes of this study, primary caregivers were identified as relatives or unpaid nonrelatives providing ADL or IADL help to a chronically disabled older adult as defined herein. As discussed, caregivers were excluded in this study if they were found to be providing help to individuals who were not chronically disabled, or if they provided help for reasons other than a health problem or disability. However, in some instances caregivers were excluded from the 1989 and 1999 Informal Caregiver Survey study samples but were considered primary informal caregivers for the purposes of this study. This discrepancy arose from two distinct data issues.
First, eligibility for the Informal Caregiver Survey was contingent on the reported provision of one or more hours of help in the week prior to the detailed community interview. When information on hours was missing, for example, if the number of hours was unknown, otherwise eligible primary caregivers were excluded from the Informal Caregiver Survey study sample. In this study we have included otherwise eligible primary caregivers with missing hours; they are included with other nonrespondents (rather than being considered ineligible) and weighted accordingly in analyses of caregivers. This issue is relevant to the comparability of estimates across years, because missing helper hours was more pervasive and therefore disproportionately influential in 1999 relative to 1989 (7.6% in 1989 vs 11.7% in 1999).
A second and more difficult challenge arose concerning chronically disabled individuals who reported receiving assistance but for whom helper payment status and relationship were not recorded. As a result, whether the primary caregiver was informal could not be determined. The proportion of chronically disabled community-dwelling elderly with helpers of indeterminate eligibility status was 1.2% and 11.5% in 1989 and 1999, respectively. These individuals were judged to be not eligible for the Informal Caregiver Survey. In this study, we addressed this issue by presenting two sets of estimates regarding characteristics of chronically disabled older people who received help: one that excluded individuals with helpers of indeterminate eligibility, and another set that included individuals with helpers of indeterminate eligibility. Information regarding caregiver characteristics necessarily excludes helpers of indeterminate eligibility.
Table 1 provides weighted and unweighted estimates of chronically disabled community-dwelling older adults and their helper status. These data indicate that the overall population of chronically disabled community-dwelling older adults increased from 5.3 million in 1989 to 5.6 million 1999. The proportion of chronically disabled individuals who received no human help increased from 22.3% to 29.5%, and the proportion who relied on help from a paid primary caregiver increased from 6.3% in 1989 to 7.6% in 1999. Applying this study's eligibility criteria yielded a total of 2,552 chronically disabled older adults who received assistance from a primary informal caregiver in 1989 (of which 977 were in the designated subsample for Informal Caregiver Survey interview) and 1,622 such individuals in 1999. These unweighted samples were representative of 3,733,000 and 2,880,000 community-dwelling disabled older adults with primary informal caregivers in 1989 and 1999, respectively. Interviews were completed with 814 of 977 eligible caregivers in 1989 (83.3% response rate), and 1,149 of 1,622 eligible caregivers in 1999 (70.8% response rate).
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To ensure comparability across time periods, new caregiver weights were constructed for this study. In both years, detailed community weights for NLTCS respondents who met study disability criteria were the starting point. A nonresponse adjustment was applied to the weights in both years, using the 1999 approach (response status of recipients by age, i.e., 65–74, 75–84, and 85 years or older; gender; and disability level, i.e., IADLs only, one or two ADLs, three or four ADLs, and five or six ADLs). In addition, we defined nonrespondents to include not only those caregivers who were targeted and did not complete the Informal Caregiver Survey interview, but also caregivers who were not designated as eligible for interview because hours of help were not recorded (discussed in earlier paragraphs and in Table 1). Information on the original nonresponse adjustment strategy for 1989 was obtained from the Center for Demographic Studies at Duke University (R. Schwartz, personal communication, March 16, 2005).
Data Analysis and Estimation
The analysis first compared demographic characteristics and the functional health of disabled older adults who were receiving assistance from family or friends in 1989 and 1999. We then examined the composition, characteristics, and involvement of primary caregivers for the two time periods. Given the recognized importance of relationship to caregiving dynamics (Shanas, 1979; Stone et al., 1987), we stratified analyses of caregiver characteristics, the assistance provided and received from others, and competing demands by primary caregiver relationship to recipient (spouse, child, other). We observed striking changes in secondary caregiver involvement during the decade of interest; therefore, we performed additional analyses to further elucidate circumstances surrounding these changes.
Standard errors of estimates were generated using the generalized variance function method described in the "Source and Accuracy Statement" released by the Center for Demographic Studies to account for the NLTCS sampling strategy. Estimates that cannot be considered reliable (relative standard errors exceeding 30%) are noted in our tables. Statistical tests of difference were calculated for differences in estimates across the two time periods. Unless specifically mentioned in the text, we limited notable differences to statistically significant findings at the.05 level. Missing data were minimal for recipient characteristics (< 1.0% for all measures) and were generally low for spouse and child caregivers (0.0% to 5.5%), but were somewhat higher for other caregivers.
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Results |
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Focusing on older adults with primary caregivers eligible for this study (the sample of interest for all remaining analyses) in 1999, we found that recipients were, on average, 80 years of age and were predominantly female (66.1%), married (45.4%), or widowed (45.1%), and most often lived with a spouse (35.7%), with a spouse or children (29.5%), or alone (25.4%). Recipients reported a substantial burden of disability; 72.4% received task assistance with one or more ADLs and 25.6% received assistance with five or six ADLs.
Who Are the Primary Caregivers?
The proportion of spouse primary caregivers was relatively stable across the decade of interest, but the proportions of child and other primary caregivers shifted, with children being more likely to take on this role (41.3% in 1999, up from 35.9% in 1989) and others being less likely (20.4% in 1999, down from 24.3% in 1989; Table 3). By 1999, nearly 45% of all primary caregivers were older than 65 years of age, with 47.4% of spousal primary caregivers being 75 years or older. In 1999, approximately two thirds of primary caregivers were female, although male caregivers were increasingly represented across all relationship types over the decade of interest (p <.10). The distribution of primary caregivers' marital status, self-rated health, and distance to recipients' residence was generally stable within relationship types across the two time periods. More than 95% of all primary caregivers lived within 30 min of recipients in both years; this close proximity likely reflects the high disability levels and related needs of disabled older care recipients.
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Competing Demands and Secondary Assistance
There was considerable variation in the proportion of primary caregivers with competing demands across relationship types (Table 5). For example, 31.6% of primary caregivers were employed in 1999, but this ranged from a low of 8.2% among spouses to a high of 50.4% among children. Approximately half of the employed primary caregivers experienced some level of work conflict in terms of rearranging their work schedules, working fewer hours, or taking time off without pay. These trends were fairly constant during the two time periods, with the exception of employment and work conflict among spouses, both of which declined over the decade of interest.
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Secondary Support by Type and Intensity of Caregiver Assistance
To further elucidate circumstances surrounding the shifts in secondary caregiver involvement between 1989 and 1999, we examined primary caregiver involvement by presence of secondary caregivers (Table 6). Not surprisingly, primary caregivers going it alone were most likely to be caring for the least impaired recipients (33.9%) and least likely to be caring for the most disabled ones (18.8%). In contrast, primary caregivers with paid help alone or in conjunction with unpaid help were least likely to care for the least disabled recipients (14.5%) and most likely to provide help to individuals with disability in five or six ADLs (40.1%). With that said, the shift from lower to higher levels of recipient disability was significant across all groups of primary caregivers, regardless of secondary caregiver involvement.
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Lastly, given the striking decline in secondary caregiver involvement between 1989 and 1999, we examined the extent to which this finding was robust to varied assumptions regarding primary caregiver eligibility. Relying on unweighted data (the 1989 sampling strategy precludes the use of sampling weights) and making the most extreme assumption that all helpers of indeterminate eligibility were in fact eligible primary informal caregivers with secondary caregiver involvement, we observed an increase in the proportion of primary caregivers going it alone from 34.9% to 42.5% (as compared with unweighted estimates of 35.3% to 51.9% when helpers of unclear eligibility were excluded; data available upon request). Thus, the finding regarding declines in secondary caregiver involvement does appear to be real, despite some uncertainty regarding its magnitude.
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Discussion |
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Declines in Secondary Caregiver Involvement
There were notable increases in age and disability in this sample of disabled older adults living in the community and receiving assistance from family or friends. By 1999, nearly one third of recipients were at least 85 years of age and more than one in four recipients were disabled in five or six ADL activities. In light of increases in the recipients' levels of disability, the observed increases in the proportion of primary caregivers who reported going it alone were particularly striking. The percentage of primary caregivers serving as sole caregivers increased from 34.9% in 1989 to 52.8% in 1999, with declines in assistance from secondary caregivers evident for family and friends, as well as paid helpers. These findings must be interpreted with caution in light of the high proportion of disabled older adults in 1999 who reported receiving help but whose helpers were excluded from the study as a result of missing information on payment status and relationship. However, we found that this trend persisted even under the conservative assumption that all unidentified helpers were informal primary caregivers with secondary caregiver involvement. Declining secondary caregiver involvement has been reported by others (Spillman & Pezzin, 2000), and it has many possible causes, including greater geographic mobility, greater female workforce participation, increasing reliance on child primary caregivers who may have previously provided secondary support, and environmental and technologic changes (e.g., assistive technology) that may generally diminish a person's need for human help.
Declines in the proportion of primary caregivers with secondary helpers who were paid also were sizeable between 1989 and 1999, and seemingly are inconsistent with earlier evidence suggesting greater reliance on paid care among family caregivers (Liu et al., 2000; Spillman & Pezzin, 2000). Although the percentage of chronically disabled older adults relying on a paid primary caregiver increased slightly over this time period, after taking into account trends in secondary paid help, we found that paid help declined overall. The time period of interest in each analysis is an important consideration. Studies showing increased reliance on paid care (Liu et al.; Spillman & Pezzin) examined time periods prior to 1997, when financing of Medicare's home-health benefit shifted from cost-based to prospective reimbursement. There is strong evidence that changes to the financing of Medicare's home-health benefit decreased services overall and shifted the mix of home-health services away from personal care services and toward skilled care (McCall, Korb, Petersons, & Moore, 2003; Murtaugh, McCall, Moore, & Meadow, 2003). Although changes in Medicare reimbursement may have contributed to observed declines in paid help, establishing such a relationship is beyond the scope of these data.
Changing Caregiver Experiences
The information presented herein confirms broad differences in the caregiving experience by virtue of relationship. In particular, spousal primary caregivers were most likely to serve as sole caregivers and to provide assistance with the greatest frequency and intensity. Child primary caregivers were most likely to face the challenge of juggling caregiving responsibilities along with either work or childrearing. It has been posited that the role of primary caregiver is typically assumed in a hierarchy: first spouses, then children, and finally other relatives or friends (Shanas, 1979). Our findings are generally consistent with this hypothesized hierarchy, although there was a shift over the decade of interest toward representation of men and greater reliance on children. Interestingly, these data also indicate that other primary caregivers were more likely to provide help of greater intensity, both in terms of hours of care and types of tasks (e.g., personal hygiene) in 1999 relative to 1989. Unfortunately, little detail was available regarding the specific relationship of these other primary caregivers to recipients.
It is counterintuitive that, in the face of significant increases in disability among recipients and decreases in the proportion of primary caregivers with secondary helpers, the average hours of help provided by primary informal caregivers decreased from 31 hr to 30 hr between 1989 and 1999. In fact, these data indicate that given the greater task needs of recipients, primary caregivers have shifted the nature and frequency of assistance provided. Relative to 1989, primary caregivers were more likely to provide assistance with greater frequency and to help with administration of medicine and indoor mobility, but were less likely to provide help with household tasks, shopping, or transportation in 1999. Given the generally high levels of care being provided, caregivers may necessarily make trade-offs about what types of assistance to supply within a finite amount of time, shifting help away from what are perhaps more time-consuming and discretionary tasks to those deemed most essential.
We found a greater proportion of chronically disabled older adults who received no help, along with a decrease in the number who relied on primary informal caregivers between 1989 and 1999. Decreases in reliance on human help (Freedman et al., 2004; Spillman, 2004) and informal help (Wolf, Hunt, & Knickman, 2005) have been reported by others and may be attributed to several factors. First, there is evidence to suggest that there have been declines in IADL disability among community-dwelling older adults in recent years (Freedman et al., 2004; Freedman, Martin, & Schoeni, 2002; Manton & Gu, 2001; Spillman), which could reduce the need for human help. Growth in assisted living as a residential arrangement also could partially account for fewer caregivers in this particular study, in that individuals living with three or more unrelated individuals in settings with medical supervision were targeted for the NLTCS institutional interview and were therefore excluded from the Informal Caregiver Survey. Other plausible causes include increased use of technology or assistive devices, or changes to the built environment that might simplify some tasks and diminish a person's need for human help. Whether these observed declines reflect increased unmet need also is an important question and cannot be ruled out.
Limitations
It is important to emphasize that this study was restricted to primary informal caregivers rather than all informal caregivers who provide assistance to disabled older adults. That said, it is recognized that primary caregivers typically provide higher levels of assistance than other caregivers (Donelan et al., 2002; Spillman & Pezzin, 2000; Stone et al., 1987). To the extent that primary caregivers provide help with the greatest intensity, are more likely to coreside with recipients (Stone et al.), and may serve as the critical link in maintaining community residence, they are an important target for government, health plan, or employer policies that provide financial support or other assistance to caregivers.
The findings of this study vary from other reports of family care in several important ways. First, the study is restricted to assistance provided to disabled older adults living in the community rather than the entirety of individuals of all ages and in all settings who require assistance with daily tasks. Second, this study draws from a well-defined target population of individuals receiving assistance and primary caregivers actively providing help. Because of these issues, the number of caregivers identified here as providing assistance is substantially lower than has been reported elsewhere (DHHS, 1998; National Alliance for Caregiving [NAC] & AARP, 2004).
Despite differences in definitions of family caregiving, our findings are consistent with other published reports in several respects. For example, the disproportionate representation of women, spouses, and children among primary caregivers as well as the reported duration and intensity of assistance are comparable with the findings of other studies (Donelan et al., 2002; NAC & AARP, 2004; Stone et al., 1987). Findings related to the extent to which primary caregivers were employed (NAC & AARP) or living at a distance are lower than has been reported elsewhere (Donelan et al.; NAC & AARP), but they are not unreasonable given the high levels of disability in the sample population. The finding that about half of all employed caregivers experienced some level of work conflict is consistent with other studies describing the considerable economic and personal consequences that often accrue to employed family caregivers (Covinsky et al., 2001; Doty, Jackson, & Crown, 1998).
In order to compare data from 1989 and 1999, we took care to construct comparable study samples and to provide transparency in the treatment of potential threats to comparability posed by sampling and data-collection processes of the NLTCS and Informal Caregiver Survey. Nonetheless, different assumptions regarding the construction of the study samples and the eligibility of helpers of indeterminate eligibility could change the magnitude of study findings. For example, weighted estimates indicate that the proportion of primary caregivers without secondary caregiver involvement increased from 34.9% to 52.8% between 1989 and 1999. Sensitivity analyses based on the most extreme assumption that all helpers of indeterminate eligibility were in fact eligible informal primary caregivers and that all had secondary caregiver involvement reduced the magnitude of this difference from 18% to 8%. Similarly, sensitivity analyses related to key findings regarding declining numbers of primary caregivers and increasing disability levels of chronically disabled older care recipients persisted under the most conservative assumptions, albeit reduced in magnitude (Table 1). Thus, despite a number of important data issues, we believe the general trends reported here are robust to the most obvious concerns regarding cross-wave comparisons.
Policy Implications
This comprehensive profile of primary caregivers and the disabled older adults to whom they provide assistance has considerable relevance to policy makers charged with crafting sustainable long-term-care systems. The cost of long-term care in 2000 was estimated at $123 billion, and this cost is expected to more than double to $295 billion by 2030 (Congressional Budget Office, 1999). These figures are particularly impressive in that they exclude all accounting of family caregivers' efforts. The implications of reductions in family caregivers' help could be enormous. Other countries have moved to explicitly recognize and reward family care as part of the long-term-care continuum (Geraedts, Heller, & Harrington, 2000). There is some momentum in this country toward adopting consumer-directed models that afford greater flexibility in directing payments to nonagency caregivers, including family, though efforts thus far have largely been concentrated within the Medicaid program (Benjamin, 2001; Foster, Brown, Phillips, & Carlson, 2005; Foster, Brown, Phillips, Schore, & Carlson, 2003).
The National Family Caregiver Support Program is the first federal initiative to explicitly recognize and support family caregivers. Stated goals of the program include dissemination of information to caregivers so that they may better access supportive services, organization of support groups, as well as the provision of individual counseling, training, respite care, and other supplemental services on a limited basis. National program funding totals $155 million, which is small relative to the estimated contributions of family caregivers (e.g., Arno, Levine, & Memmott, 1999; DHHS, 1998). Preliminary reports indicate considerable variability in the program administration, design, and service delivery of the National Family Caregiver Support Program, but that it has increased awareness of family caregivers (rather than only recipients) as legitimate consumers of community services (Feinberg & Newman, 2004).
In fact, looking more broadly than the National Family Caregiver Support Program, there is little consensus regarding how to best support caregivers. Numerous caregiver interventions have cumulatively failed to generate a strong evidence base about how to best train and support caregivers in their diverse roles (Knight, Lutzky, & Macofsky-Urban, 1993; Sorensen, Pinquart, & Duberstein, 2002; Zarit, Gaugler, & Jarrott, 1999). In addition, most intervention studies have targeted narrow populations of caregivers who provide assistance to individuals with a specific index disease (Brouwer et al., 2004; Han & Haley, 1999; Harding & Higginson, 2003; Schulz et al., 2002), limiting the ability to translate study findings more broadly. Fragmented financing, multiple points of entry, variable service offerings, and lack of a standardized approach to caregiver assessment cumulatively impede family caregivers' access and use of existing community services.
This study confirms the commitment and contributions of primary informal caregivers to caring for disabled older adults living in the community. Moreover, findings indicate that despite substantial increases in age and disability among care recipients, there were striking increases in the proportion of primary caregivers providing assistance alone. These data, in conjunction with projected increases in the numbers of older people living with chronic illness and disability, underscore the importance of improving our understanding of what approaches most effectively sustain family caregivers. The findings indicate a very real need to systematically and comprehensively monitor family caregiving and the impact of caregiver-support initiatives in the coming years.
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Footnotes |
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1 Department of Health Policy and Management and the Roger C. Lipitz Center for Integrated Health Care, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD.
2 Division of Geriatrics and Gerontology, Johns Hopkins University School of Medicine, Baltimore, MD.
Decision Editor: Linda S. Noelker, PhD
Received for publication August 23, 2005. Accepted for publication January 3, 2006.
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