| HOME | ARCHIVE | SEARCH | TABLE OF CONTENTS |
|---|
| ||||||||||||||||||||||||
Correspondence: Address correspondence to David L. Roth, PhD, Department of Biostatistics, School of Public Health, University of Alabama at Birmingham, 327 Ryals Building, Birmingham, AL 35294-0022. E-mail: droth{at}uab.edu
 |
Abstract |
|---|
 TOP Abstract MethodsResultsDiscussionReferences |
|---|
Key Words: Caregiving • Availability of informal caregivers • Race • Gender • Care burden
Despite concerns about the future availability of informal caregivers, there are surprisingly little data on the perceived availability of informal caregivers for middle-aged or older adults who may, at some point in the near future, need such care. We identified only one large-scale study of perceived caregiver availability among the general (i.e., nondisabled) population, which was published more than 10 years ago and based on a sample of young-old Mexican Americans and non-Hispanic Whites in the San Antonio, Texas, area (Talamantes, Cornell, Espino, Lichtenstein, & Hazuda, 1996). In that study, men were more likely to identify their spouses as potential caregivers than women, and participants with multiple chronic conditions were less likely to report that they had someone to provide care for them than participants with no chronic conditions or only one such condition.
Although researchers know little about perceived caregiver ability, more information is available about individuals who actually become caregivers and about disabled individuals who lack informal caregiving assistance. A recent meta-analysis of 229 studies reported that 69% of the informal caregivers were women (Pinquart & Sörensen, 2006). Studies have also found that women take on more caregiving tasks, report more care recipient problems, and experience more distress due to caregiving than male caregivers (Pinquart & Sörensen, 2006; Yee & Schulz, 2000). A similar meta-analytic review documented that White caregivers are more likely to be spouses, whereas African American families utilize adult daughters as caregivers to a greater extent (Pinquart & Sörensen, 2005). A recently published update of national statistics on caregiving found an increasing trend for declining levels of caregiving assistance and increasing numbers of disabled older adults reporting no formal or informal caregiving assistance (Wolff & Kasper, 2006). People receiving informal care were older and more severely impaired at the time of the most recent survey. Similarly, Lima and Allen (2001) found that about 21% of disabled older adults had either partially or completely unmet needs for care, and unmet needs for care were highest among disabled individuals who were female, African American or Hispanic, living alone, and divorced or separated.
The REasons for Geographic and Racial Differences in Stroke (REGARDS) study is a large national cohort study examining the causes of geographic and racial differences in stroke incidence and mortality. This study recruits community-dwelling African Americans and Whites older than age 45 from across the country to participate in a structured telephone interview and an in-home evaluation to assess known and suspected risk factors for stroke (G. Howard et al., 2006; V. J. Howard et al., 2005). As part of the intake assessment, interviewers ask REGARDS participants about the availability of an informal caregiver in the event of a serious illness or disability and related questions concerning the characteristics of that potential caregiver. These data provide a unique opportunity to study perceived caregiver availability and to assess predictors of caregiver availability in a large national sample. Our goals for the present article are (a) to describe the frequency of perceived caregiver availability in this large national sample; (b) to determine whether perceived caregiver availability varies by race, gender, age, marital status, or other demographic variables; (c) to determine the multivariable profile of individuals at greatest risk of not being able to identify a likely informal caregiver; and (d) to describe the characteristics of the individuals who are identified as potential caregivers.
|
Methods |
|---|
|
TOPAbstractMethodsResultsDiscussionReferences |
|---|
A letter and brochure are mailed to each potential participant, and approximately 2 weeks later a contact by telephone is attempted. The mailings are made in accordance with a stratified random sampling design that calls for 50% of the sample to be obtained from the "stroke belt" and the remaining 50% to reside in the rest of the 48 contiguous states. The stroke belt consists of southern states (Alabama, Arkansas, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, and Tennessee), and within this region, 40% of the sample (20% of the overall sample) is being recruited from the "stroke buckle," which consists of the coastal plains region of North Carolina, South Carolina, and Georgia. The remaining stroke belt cases (30% of the overall sample) reside in the stroke belt states but not in the stroke buckle region.
Within each region, the stratified random sampling design calls for approximately half of the sample to be African American and half White, and within each region–race stratum, approximately half male and half female. Exclusion criteria include age younger than 45, race other than African American or White, previous diagnosis for cancer requiring chemotherapy, a serious medical condition that would prevent long-term participation in the project, residence in or being on a waiting list for a nursing home, and inability to communicate in English. In the initial telephone calls, interviewers determine the number of adults older than 45 residing in each household; in households with more than one such resident, one potential participant is randomly selected and invited to enroll in the project. The study has a 44.7% response rate. This rate represents the percentage of known and expected eligible candidates who have agreed to participate in the baseline telephone interview and is comparable to rates observed in other cohort epidemiologic studies (Morton, Cahill, & Hartge, 2006).
From January 2003 through May 1, 2006, a total of 32,999 participants enrolled in the REGARDS study and completed the initial telephone interview. Of these, 32,957 (99.9%) answered the interview question about whether they had an informal caregiver available to them if they were to experience a serious illness or become disabled (see "Procedures" section). These 32,957 participants constitute the sample for the analyses reported here. Table 1 provides descriptive data about the sample.
|
Procedures
Trained interviewers with the University of Alabama at Birmingham Survey Research Unit made the telephone calls and first established eligibility for participation. Once eligibility was confirmed, the interviewer further explained the REGARDS study and obtained verbal informed consent. The Survey Research Unit interviewer then proceeded to administer a computer-assisted telephone interview that obtained information on demographic variables, socioeconomic status (income, education), current living arrangement (e.g., number and age of other individuals living with the participant), medical history, self-rated health (excellent, very good, good, fair, poor), quality of life, social support, and potential caregiver availability.
Near the end of the computer-assisted telephone interview, after obtaining all medical history and current health information, the interviewer asked, "If you had a serious illness or became disabled, do you have someone who would be available to provide care to you on an on-going basis?" Response options were "yes," "no," or "don't know/not sure." Those who responded "yes" were then asked what relationship this person had with them (e.g., spouse, daughter, son, sister, brother) and whether they currently lived in the same residence with this person.
We conducted a series of chi-square analyses and logistic regression analyses to examine age, gender, race, and health effects on participant responses to the caregiver availability question. Analyses (a) compared "yes" responses to a combined reference category of both "no" and "don't know/not sure" responses, and (b) compared "yes" to "no" responses (with "don't know/not sure" responses coded as missing). Those two sets of analyses yielded very similar results, with slightly larger effect sizes observed for some variables using the second option. Consequently, in this article we report only the results that were based on the combined referent category, which tended to yield slightly more conservative effect size estimates and included data from all 32,957 participants who answered the caregiving availability question.
After simple bivariate analyses, we conducted multivariable logistic regression analyses that predicted perceived caregiver availability as a function of gender, race, age, marital status, education, living status, and self-rated health simultaneously. We based this analysis on 32,788 participants (99.4%) who did not have any missing data on the caregiver availability question or on any of these predictor variables. The multivariable analysis allowed an examination of unique predictive effects of each variable after controlling for the effects of the other correlated predictor variables in the model. To examine group differences in the relationship between the participant and available caregiver, we conducted additional frequency analyses on those who reported having a caregiver available to them.
|
Results |
|---|
|
TOPAbstractMethodsResultsDiscussionReferences |
|---|
Univariate Predictors of Caregiver Availability
Of the 32,957 participants interviewed, 26,483 (80.4%) answered "yes" to the question about whether they believed they had someone available to provide care to them if they experienced a serious illness or became disabled. A total of 4,216 (12.8%) responded "no" to this question, and the remaining 2,258 (6.9%) were unsure. Men were more likely to report having a potential caregiver than women (84.7% vs 76.8%, p <.0001). The overall difference by race was very small and was not statistically significant (80.0% vs 80.7% for African American and White participants, respectively, p =.09). We analyzed age as a categorical variable with five categories (45–54, n = 3,202; 55–64, n = 12,796; 65–74, n = 10,689; 75–84, n = 5,439; and 85 or older, n = 823) and found it to be highly related to perceived caregiver availability (p <.0001). Adults aged 65 to 74 reported the highest likelihood of having a caregiver, and adults older than 85 reported the lowest likelihood (79.4%, 81.2%, 81.8%, 77.7%, and 71.6% for the five age groups, respectively).
We coded marital status, education, and income into four categories as summarized in Table 1; each variable was significantly related to perceived caregiver availability (ps <.0001). For marital status, 87.9% of the married participants indicated that they had a caregiver available to them, compared to 69.4% of the divorced or separated participants, 74.5% of the widowed participants, and 63.4% of those who had never married. Income and education were positively associated with caregiver availability. In all, 89.2% of participants with incomes greater than $75,000 per year reported an available caregiver, compared to 84.3%, 79.6%, and 72.8% of those with annual incomes of $35,000 to $75,000, $20,000 to 35,000, and less than $20,000, respectively. The effects of education were smaller but still statistically significant, with college graduates (81.8%) reporting the highest caregiver availability rate compared to 80.1%, 80.2%, and 78.6% of those with some college, a high school diploma only, and less than a high school education, respectively.
Participants who lived alone were much less likely to report having a potential caregiver available to them than those who lived with at least one other person (68.5% vs 84.8%, respectively, p <.0001). Self-rated health was also highly related to caregiver availability (p <.0001). Only 69.2% of those in poor health responded "yes" to the caregiver availability question, compared to 84.9%, 83.6%, 80.0%, and 74.3% of those who characterized their health as excellent, very good, good, or fair, respectively.
Multivariable Model
The omnibus type III tests from the multivariable logistic regression model indicated that every predictor variable was significantly related to perceived caregiver availability in the multivariable model (ps <.0001) with the exception of education (p =.85). Table 2 presents the adjusted odds ratios and 95% confidence intervals for the specific contrasts within each predictor variable after accounting for the other predictors in the model. These tests were generally consistent with the univariate effects reported previously, with two notable exceptions. First, as mentioned previously, education was no longer associated with perceived caregiver availability after we accounted for the other predictors in the model. Second, African American participants were more likely to report having a potential caregiver available to them than White participants after we adjusted for racial differences on the other predictor variables (adjusted odds ratio = 1.309, p <.0001). As before, women; participants older than age 85; participants who were divorced, widowed, or never married; participants who lived alone; and participants with ratings of general health poorer than "very good" were significantly less likely to report having a potential caregiver available to them than participants in their respective reference groups.
|
The descriptive statistics in Table 1 indicated that the race and gender groups differed substantially in marital status, and we conducted additional multivariable logistic regression models that included Race x Marital Status and Gender x Marital Status interaction terms to determine if marital status affected perceived caregiver availability differently by race or gender. Those analyses revealed that the marital status effects on perceived caregiver availability were significantly stronger for Whites than for African Americans (p <.0001) and for men than for women (p <.0001). Figure 1 displays the percentages of married and unmarried (divorced/separated, widowed, and never-married) participants who indicated an available caregiver for each of the four race–gender groups. For African American women, for example, 82.8% of the married participants and 75.7% of the unmarried participants reported having a caregiver available to them, resulting in a marriage effect of 7.1% (82.8% – 75.7%). This marriage effect was more than twice as strong for African American men (16.8%: 89.0% – 72.2%) and White women (17.5%: 84.5% – 67.0%) and more than 4 times as strong for White men (30.5%: 90.9% – 60.4%).
|
|
Chi-square tests also revealed significant race (p <.0001) and gender (p <.0001) effects on whether the potential caregiver resided with the participant. Potential caregivers were more likely to reside with White men (79.4%) and African American men (66.6%) compared to White women (48.6%) and African American women (34.3%). These statistics apply only to those participants who identified an available caregiver; when we also considered the participants without caregivers, only 26.6% of the African American women reported residing with a person who was designated as a likely caregiver for them, compared to 36.8% of the White women, 55.5% of the African American men, and 68.0% of the White men.
|
Discussion |
|---|
|
TOPAbstractMethodsResultsDiscussionReferences |
|---|
This study also highlights subgroups of people with lower expectations of having an informal caregiver available to them. Participants older than 85 years of age reported the lowest level of perceived caregiver availability of any age group, and participants who rated their health as poor also reported a low rate of caregiver availability. Because older adults in poor health are probably at greatest risk of requiring caregivers in the near future, this finding uncovers a potential disparity between imminent caregiving needs and the perception of having a caregiver to fulfill of those needs. This finding that decreases in perceived health are associated with decreases in perceived caregiver availability is consistent with the earlier findings of Talamantes and colleagues (1996), who found that the number of chronic conditions was inversely related to perceived caregiver availability. Our findings are also consistent with recently identified trends that increasing numbers of disabled older adults lack caregiving assistance (Wolff & Kasper, 2006). Several interpretations might be responsible for these findings. First, the oldest participants and those with poor self-rated health may be less likely to have spouses and other family members available in good enough health to provide care. Second, these groups may have responded on the basis of actual experiences with care provision and may be less likely than younger individuals and those in good health to believe that potential caregivers will actually make the sacrifices necessary to assume the caregiving role and provide adequate assistance.
In addition to age and health effects, we also found that participants who were divorced, separated, or never married were much less likely than married participants to identify an available caregiver. The impact of marital status on perceived caregiver availability, however, varied substantially by race and gender, with White men being more likely than any other group to identify their spouses as their potential caregivers. Overall, the marital status effects are consistent with actual marital differences in availability of care. Lima and Allen (2001), for example, studied a sample of adults needing assistance with one or more activities of daily living or instrumental activities of daily living and found that divorced, separated, and never-married participants were much less likely to be receiving help than married participants.
The raw difference in perceived caregiver availability between African American and White participants was minimal. However, after we accounted for marital status and other demographic differences, we found that African American participants were much more likely than their White counterparts to identify an available caregiver. Of interest is the fact that African Americans and women were also significantly less likely to currently reside with their potential caregivers than Whites and men, respectively. African American women were the least likely to reside with the person they identified as their available caregiver, suggesting a greater ability to call on extended family members outside the home regardless of marital status or current living situation. The impact of marital status on perceived caregiver availability was significantly smaller for African American women as well. Not only were African American women less likely to be married than members of the other race–gender groups, but less than half of the African American women who were married identified their husbands as their likely caregivers. Because many wives outlive their husbands, older married women may have to adjust their plans for informal care as they age. Cultural factors and demographic influences appear to further affect this planning process for African American women compared to White women. The different characteristics of likely caregivers by race are consistent with the meta-analysis findings of Pinquart and Sörensen (2005), who showed that minority caregivers are less likely to be spouses than White caregivers and often report stronger beliefs about obligations to provide care to family members than White caregivers.
Of the 80% of our participants who affirmed their belief in the availability of a caregiver, the vast majority identified a close family member as that person. Only 3% of our participants anticipated receiving care from an unmarried partner, friend, or neighbor. Although this suggests that nonfamily sources of care may be relatively uncommon, in actuality, nonkin sources of informal care may be quite important and could be strengthened. Based on qualitative interviews, Barker (2002) estimated that nonkin caregivers were important for sustaining community living for about 10% of frail older adults. Sources of support from outside the person's family may be needed as secondary sources of informal support that provide much-needed respite to primary family caregivers, and nonkin sources of informal care may also be an important source for support for the 20% of our participants who did not identify an available caregiver from within their existing family relationships.
Among the available caregivers identified by our participants, 72% were women. This finding is consistent with the gender composition of existing informal caregiving populations (Pinquart & Sörensen, 2005). The consistency of these findings—that respondents from our large and diverse sample frequently expect a female family member to assume a caregiving role and the ubiquitous finding that women do in fact constitute the majority of informal caregivers—is informative for theoretical explanations of observed gender differences in caregiving, such as gender role socialization and gender role expectation frameworks (Barusch & Spaid, 1989; Gilligan, 1982). However, our findings also show that men are perceived to be available for caregiving roles, and a majority of the potential caregivers identified by White women were men. Of married White women, more than 70% listed their husbands as their perceived caregiver. Thus, race and marital status are important moderating factors to incorporate into theoretical approaches to gender role differences and caregiving expectations.
We excluded potential participants if they reported being on a waiting list for admission to a nursing home. Beyond this question, REGARDS interviewers did not ask participants about their expectations for formal care in the future. It is possible that some individuals who did not identify an available informal caregiver might be anticipating nursing home care in the event of a disabling illness in the future. A recent study demonstrated that individuals' expectations regarding nursing home placement are generally rooted in their personal risk profiles and are strongly associated with actual placement in the future (Akamigbo & Wolinsky, 2006). Alternative programs do exist for individuals who need care but have no informal caregiver available to them. Long-term care insurance, which has the potential to fund in-home formal services, can help disabled older adults remain at home (Cohen, Miller, & Weinrobe, 2001), as can publicly paid in-home care (Li, 2005). These programs are also appropriate for many individuals who have informal caregivers, and informal caregivers usually remain actively involved in care even with such formal support. Private or publicly funded formal care, however, may be an especially important alternative to institutionalization for aging individuals without good prospects for informal support from their families or existing social networks.
Limitations to our study include the fact that it was based on a cross-sectional survey with only a limited number of questions on caregiver availability and future plans in the event of a disabling illness. The primary dependent variable in this analysis was a single question about one's perception of informal caregiver availability. Although questions about such perceptions are often used in other areas of research (e.g., on advance directives), responses to hypothetical scenarios are obviously not perfect predictors of actual events or future decisions. Some family members whom participants identified as potential caregivers may not be able and willing to provide such care, and actual caregiving decisions may be further complicated by the actual degree of impairment experienced and caregiving required. Pillemer and Suitor (2006) found that older women who were asked to identify potential caregivers from among their adult children may have ignored some factors that could be important in the actual decisions of their children as to who will provide care. Such factors may lead some individuals to overestimate the availability of certain potential family caregivers and to underestimate the availability of other family members.
More predictive validity evidence is needed for questions concerning perceived caregiver availability and other sources of support. Akamigbo and Wolinsky (2006) found that older adults' expectations concerning the likelihood of nursing home care were predictive of actual use of nursing home care during a 5-year follow-up period, and in our own ongoing research, we are actively recruiting and following the actual caregivers of the REGARDS participants who subsequently experience strokes. Thus, we will be able to determine empirically how frequently the perceived or anticipated caregiver identified in the REGARDS intake interview actually turns out to be the primary informal caregiver following a stroke event.
Identifying a likely caregiver and discussing possible future caregiving needs with family members and friends is an important health promotion and health maintenance activity, especially for middle-aged and older adults who are at higher risk for needing such care. Social workers and case managers often document caregiver availability when an individual is released from an acute hospitalization, but it is not routine practice for health care practitioners to inquire about the availability of caregivers before a situation arises in which they are needed. In preventive health care, practitioners often urge individuals to be screened for diseases and to improve their health behaviors such as diet, smoking, and physical activity, and considerable attention has been paid to the importance of having advance directives that identify decision makers for care if an individual becomes unable to communicate his or her preferences (Ditto, Hawkins, & Pizarro, 2005). However, much less emphasis has been placed on the far more likely possibility that individuals may need informal caregiving from a family member or friend, and it is uncommon for health care providers to advise individuals to make advance arrangements with key family members or friends in anticipation of future caregiving needs. Pillemer and Suitor (2006) recommended that practitioners who work with older adults and their families pay increased attention to older adults' perceptions of potential caregivers, including during the pre-caregiving stages, as some older adults may have misperceptions about the willingness of certain family members to provide this care. Bromley and Blieszner (1997) also discussed the importance of family discussions of caregiving expectations and planning before caregiving and noted that these discussions are an important part of advance care planning beyond the legal arrangements that are made.
Clinicians are uniquely positioned to address caregiving needs as a component of comprehensive preventive care, and additional progress is needed not only to anticipate future caregiving needs but also to strengthen the support that families receive for providing informal care to older adults once these needs are evident. As Polivka (2005) pointed out, the sacrifices that informal family caregivers make constitute the bulk of the long-term care that is provided in the United States, and these efforts are estimated to be worth nearly $300 billion annually. As U.S. society ages over the next few decades, many more individuals will be asked to provide informal caregiving services to family members and friends, but it is unlikely that society can meet this demand for more capable and willing informal caregivers without crucial public policy changes. Social insurance programs and long-term-care plans could be augmented with compensation incentives for family members who provide critical care services at home, and more formal services should be made available to better complement the important contributions of informal family caregivers.
|
Footnotes |
|---|
1 Department of Biostatistics, University of Alabama at Birmingham.
2 School of Aging Studies, University of South Florida, Tampa.
3 Division of Gerontology, Geriatrics, and Palliative Care, Department of Medicine, University of Alabama at Birmingham.
4 Department of Psychology, University of Alabama at Birmingham.
Decision Editor: Linda S. Noelker, PhD
Received for publication December 13, 2006. Accepted for publication March 30, 2007.
|
References |
|---|
|
TOPAbstractMethodsResultsDiscussionReferences |
|---|
| ||||||||||||||||||||||||
| HOME | ARCHIVE | SEARCH | TABLE OF CONTENTS |
|---|
