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a Department of Epidemiology, Harvard School of Public Health, Boston, MA
b Ms. Weuve was with the Department of Family Practice and Community Health, University of Minnesota, at the time of this study
c Department of Family Practice and Community Health, University of Minnesota, Minneapolis, MN
Correspondence: Jennifer L. Weuve, MPH, Department of Epidemiology, Harvard School of Public Health, 677 Huntington Ave., Boston, MA 02115. E-mail: jweuve{at}hsph.harvard.edu.
Vernon L. Greene, PhD
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Abstract |
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. Compared with caregivers of participants in the usual care group, caregivers of participants in the GEM group were less than half as likely to report increased burden during the one-year follow-up period 
. The findings suggest that GEM helps protect the informal caregivers of high-risk older people from the increases in burden that often accompany advancing age.
Key Words: Caregiving • Burden • GEM
Informal caregivers are persons who provide unpaid assistance to relatives and friends who have health or functional needs. The growth in the number of caregivers who assist frail older adults has roughly paralleled the growth in the older adult population, particularly adults 85 or older (U.S. Bureau of the Census 1996
). Between 1988 and 1996, the estimated number of persons providing assistance to a relative or friend age 50 or older tripled to over 21 million (National Alliance for Caregiving and American Association for Retired Persons 1997). The expectations placed on caregivers will likely intensify as health systems shift care to the outpatient arena and increasing numbers of older adults strive to maintain their independence. The caregiving experience may provide emotional benefits to the caregiver, but it may also cause physical, psychological (Schulz, O'Brien, Bookwala, and Fleissner 1995), social (Miller and Montgomery 1990; Stommel, Collins, and Given 1994) and economic distress (Robinson 1997; U.S. Bureau of the Census 1996; White-Means and Chollet 1996). Such distress is often referred to as caregiver burden (Zarit, Reever, and Bach-Peterson 1980).
Research into the burden perceived by caregivers of older adults has recognized objective and subjective types of burden. Objective burden comprises tangible disruptions caused by caregiving—e.g., demands on time, effort, and money—and the effects of these disruptions on caregivers' psychological, physiological, social, and economic well-being. Subjective burden refers to caregivers' feelings about their caregiving activities. Objective and subjective burden overlap and share some correlates, although the nature and strength of the correlations differ according to the burden scale used and the correlates examined (Lawton, Kleban, Moss, Rovine, and Glicksman 1989; Montgomery, Gonyea, and Hooyman 1985; Vitaliano, Russo, Young, Becker, and Maiuro 1991).
The literature provides incomplete and sometimes conflicting observations about the natural trajectory of caregiving burden over time (Mailick Seltzer and Wailing Li 1996). It is clear, however, that increases in the magnitude of burden often influence informal caregivers' decisions about continuing to provide care, particularly their decisions about admitting their care recipients to long-term care facilities (Lieberman and Kramer 1991; Miller and Montgomery 1990; Mittelman, Ferris, Shulman, and Levin 1996; Stuckey, Neundorfer, and Smyth 1996). Projected increases in the number of informal caregivers in the future, coupled with a growing recognition of the significant consequences of caregiving, have stimulated researchers to begin to measure caregiver burden as an important outcome of clinical interventions designed for frail older adults.
Outpatient geriatric evaluation and management (GEM) is a sustained, intensive, and interdisciplinary intervention that includes assessing a frail older adult's medical, psychosocial, and functional capabilities and limitations and then providing comprehensive, interdisciplinary, ongoing care that is tailored to the needs identified during the assessment. Because GEM teams provide services intended to reduce or meet frail older persons' functional and social needs, one might expect them to protect the informal caregiver from the increasing burden that often accompanies the frail person's continued aging. Conversely, GEM could conceivably increase the caregiver's burden by recruiting even more of his or her assistance.
Several studies have examined the effects of multifaceted health care on caregiver burden. In a randomized trial of inpatient comprehensive geriatric assessment, informal caregivers of participants in the intervention group were more likely than their control counterparts to report good general health 
3 months after the assessments were completed (Silliman, McGarvey, Raymond, and Fretwell 1990). In a randomized trial of outpatient comprehensive geriatric assessment, caregivers of participants in the intervention group reported less family strain 
and less burden 
after one year than caregivers of participants who received usual medical care (Silverman et al. 1995). The differences in family strain and burden were reflected in single measurements, rather than in longitudinal changes. These programs recommended but did not provide treatment to the participants after assessment. Similar studies have reported reductions in specific domains of caregiver burden following older persons' participation in other interventions such as adult day care (Zarit, Stephens, Townsend, and Greene 1998) and case-managed in-home services (Braun and Rose 1994).
Based on these limited and indirectly related findings, we held the a priori hypothesis that, compared with caregivers of control participants, caregivers of GEM participants would experience less burden over time. More specifically, we hypothesized that, in the absence of any intervention, caregivers' burden would increase over time, and that the GEM intervention would, at minimum, postpone the worsening of burden.
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Methods |
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). Thus, we began by recruiting a sample of high-risk older adults from the community using a screening instrument (the Pra) that quantifies respondents' probability of repeated admission to hospitals in the future (Boult et al. 1993; Boult, Boult, Pirie, and Pacala 1994; Pacala, Boult, and Boult 1995; Pacala, Boult, Reed, and Aliberti 1997). We mailed Pra questionnaires to 23,801 fee-for-service Medicare beneficiaries age 70 or older who were living in or near Ramsey County, Minnesota; 14,536 (61%) responded. We excluded 12,730 respondents on the basis of low Pra scores, residence in nursing homes, inability to adhere to study protocols, extended travel, serious illness, or death. Of the remaining 1,806 eligible persons, 621 (34.4%) consented to participate, and 568 (91.5%) of these completed a structured baseline interview about their health and were randomized to receive either GEM 
or care from their usual providers 
for 6 months. A detailed description of the recruitment process has been published previously (Boult, Boult, Morishita, and Pirie 1998).
In conducting the baseline interview, a trained research technician asked each participant, "Do you have friends, family, or neighbors who assist you in activities such as shopping, dressing, or taking medications at least once a week?" During this interview, 83 (30.3%) of the participants in the control group and 70 (23.8%) of those in the GEM group answered affirmatively. In follow-up to each affirmative response, the technician, who was blinded to the group assignments, called the identified informal caregiver to explain the caregiver study, to request consent, and to administer a structured burden assessment instrument (Montgomery et al. 1985). As shown in Fig. 1, of the 153 caregivers identified, 99 (65%) consented to participate in the study. Twelve months later, the technician, still blinded, administered the same instrument by telephone again.
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). The team's social worker initiated the GEM intervention with a home visit during which she provided information about GEM, assessed the participant's psychosocial and environmental needs, identified current medications, and arranged the participant's initial visit to the GEM clinic, at which the GNP conducted a history and a physical examination. At the second clinic visit, the GEM nurse, the social worker, and the geriatrician completed their evaluations and developed an integrated set of treatment goals and plans. During seven subsequent visits over 6 months, on average, the GEM team provided medical treatment, care management, educational information, counseling, assistance with advance directives, and referral to agencies and other professionals, as needed. When the team members agreed that the GEM participant had attained the GEM treatment goals or was adhering to a comprehensive plan of care that could be continued successfully without the GEM team, they discharged him or her back to the original primary care physician. The informal caregivers of the GEM recipients did not receive a standard intervention, although the GEM providers did counsel caregivers and refer them to other providers and resources such as adult day care centers, community services, and support groups (e.g., Services for the Blind and the Alzheimer's Association), as needed.
Measurement
We assessed caregiver burden by telephone, using a previously developed inventory (Montgomery et al. 1985) that consists of 22 equally weighted statements about perception of burden. Previous research has shown that high scores on this instrument (indicating high levels of perceived burden) are associated with caregivers' age (younger), income (higher), number of other helpers (fewer), and specific caregiving tasks. Designed specifically for use with caregivers of frail older adults, this inventory is an abbreviated form of a 29-item questionnaire designed to measure the perception of burden among the caregivers of older adults with dementia (Zarit et al. 1980).
Thirteen of the 22 items assess subjective burden 
in terms of the caregiver's attitudes and emotional reactions toward caregiving (e.g., "I feel that I don't do as much for my [recipient] as I could or should"). Respondents reply on a 5-level Likert scale, i.e., from "rarely or never" to "most of the time." The remaining nine items, also rated on a 5-level Likert scale, appraise objective burden (Cronbach's alpha = 0.85) in terms of the level of logistical disruption in the caregiver's life. We were primarily interested in the effect of outpatient GEM on caregivers' total burden score 
, that is, the composite of objective and subjective burden. We supplemented the burden interview with questions eliciting information about the caregiver's demographic characteristics, relationship to the care recipient, particular tasks performed, time spent on caregiving, and previous experience in caregiving.
As a part of the larger study, each care recipient completed a structured, blinded telephone interview at baseline and one year later that included the Geriatric Depression Scale (GDS; Yesavage and Brink 1983), the Physical Functioning Dimension of the Sickness Impact Profile (SIP:PFD; Bergner, Bobbit, Carter, and Gilson 1981), and individual questions about general health and recent restricted activity days, bed disability days, and use of prescription medications, home care, and nursing homes.
Analysis
Measuring change in burden over time required that a caregiver provide care throughout the year and complete both the baseline and one-year burden interviews. Thus, we omitted from our analysis data from 11 caregivers who did not meet these criteria (see Fig. 1). We coded each Likert response so that the lowest value represented the least amount of burden, imputing values for the single items omitted by each of three caregivers.
The primary outcome of interest was a meaningful increase in individual caregivers' burden during the year following the baseline interview. The literature provides little guidance, however, on judging meaningful changes in burden on the basis of numeric changes in TBSs over time. Therefore, we analyzed the distribution and the correlates of various changes in TBS observed in this population. An increase of 5 or more TBS points between the baseline and the one-year follow-up interview emerged as the best available marker for a meaningful increase in burden. This threshold identified the caregivers in the top 29% of the distribution of the change scores. In contrast to the caregivers with lower change scores, i.e., less than 5, this cohort experienced changes in other characteristics that are consistent with a meaningful increase in burden. For example, they reported greater median increases in caregiving hours per week (6.0 vs –1.0), and their care recipients reported larger median increases in SIP:PFD scores (5.1 vs 3.9) and GDS scores (1.5 vs 0.5) between the baseline and the one-year follow-up interviews.
For baseline comparisons, we used Student's t test to compare continuous variables, the continuity-corrected chi-square test or Fisher's Exact Test (two-tailed) to compare dichotomous variables, and Pearson's chi-square test to compare polychotomous variables. We analyzed categorical change data using stratified tabular methods and continuity-corrected, Mantel-Haenszel, and Breslow-Day chi-square statistics. To statistically adjust for the effects of covariates, we used logistic regression techniques and then converted the resulting odds ratios to risk ratios (Zhang and Yu 1998). We restricted our models to those with three or fewer variables, because of the limited number of events in each group (caregivers whose burden worsened). Larger models would have been inherently unstable.
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Results |
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. During the one-year observation period, the mean burden scores of the GEM caregiver group tended to decline, while the mean scores of the control caregiver group tended to increase or decline less substantially (see Table 3 ). We then compared the percentage of caregivers in each group who experienced worsened burden, classifying each person's 0–12 month change in TBS as either substantially increased (change in TBS 
5) or not (change in TBS < 5). Caregivers in the GEM group were less than half as likely to experience significantly increased burden during the year of follow-up 
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Stratified Analysis
To investigate the consistency of these findings, we evaluated the effect of group assignment on the likelihood of increased burden after a year within nine strata of the study population. As shown in Fig. 2, the protective effect of GEM tended to be stronger (i.e., the risk ratios tended to be smaller) among caregivers: who were friends, neighbors, or other relatives; who lacked previous training or experience related to caregiving; and who were sharing their caregiving responsibilities with paid or other informal caregivers. None of these within-group differences in GEM's effect was statistically significant.
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We found that assignment to GEM was associated with a reduction in the amount of time caregivers devoted to assisting their recipients in dressing; the GEM caregivers reported an average reduction of 0.55 hour/week, while the control caregivers reported an average increase of 0.24 hour/week 
. GEM was also associated with a lower likelihood of initiating paid home care. Of the recipients not receiving any formal assistance at baseline 
, 42% of the control recipients had initiated formal assistance during the year of follow-up, compared with 17% of the GEM recipients (
). Neither change in time spent on dressing nor the initiation of paid home care, however, was associated with the risk of worsening burden. Assignment to GEM was not associated with changes in time spent on other tasks, changes in time spent on all tasks, changes in the recipients' GDS scores, or changes in the recipients' SIP:PFD scores.
We did, however, identify factors that appeared to affect the risk of increased burden among the control caregivers, but not among the GEM caregivers. As shown in Fig. 3, among the control caregivers, an increase in the amount of time spent managing money was associated with a greater risk of increased burden. Among the GEM caregivers, however, this pattern did not exist 
. Similarly, increased GDS scores (i.e., more depressive symptoms) among care recipients were associated with increased burden in the control group, but not in the GEM group (p for difference in effect 
. Among the 14 control recipients and 5 GEM recipients whose GDS scores increased by three or more points (i.e., the 75th percentile of GDS changes), eight (57%) of the control caregivers and none of the GEM caregivers experienced increased burden 
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Discussion |
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. The association between GEM and caregiver burden retained its magnitude and significance even after we adjusted for the possible confounding effects of four baseline differences between the GEM and control groups. This protective effect is generally consistent with the findings from earlier studies of inpatient and outpatient comprehensive geriatric assessment (Silliman et al. 1990; Silverman et al. 1995). The inpatient study, however, measured the effects of assessment on caregivers' well-being, a construct broader than burden (Stuckey et al. 1996; Stull, Kosloski, and Kercher 1994), and the outpatient study relied on a single burden question and a family strain index. The wide differences between these measures of burden and those used in the present study preclude more quantitative comparisons of the studies' outcomes.
Caregivers who were less experienced in caregiving and less closely related to their care recipients tended to benefit more from the protective effect of GEM than did experienced or familial caregivers. Although these differences were not statistically significant, they suggest that the GEM intervention might have been particularly effective with less proficient caregivers by teaching them new skills, by encouraging their efforts, or by facilitating their use of other informal services. Caregivers who were receiving paid or informal assistance at baseline appeared to receive greater protection against increased burden from GEM than those with less help. This may have occurred because the care recipients of the former group may have been more disabled (
, or because GEM may have helped caregivers to use these resources more effectively.
The channels through which GEM protected caregivers from increased burden are only partially elucidated by these data. Although GEM did not reduce total caregiving time, it may have helped caregivers to use their time more effectively. Enhanced competence in performing caregiving tasks and an expanded support network may have enhanced the caregiver's confidence and effectiveness in his or her caregiving role and may have buffered the effects of increasing caregiving time or deterioration in the recipient's mood, behavior, or function. A randomized controlled study of a counseling and support group intervention for the informal caregivers of Alzheimer's disease patients 
drew similar conclusions; the intervention was associated with an average reduction in time to nursing home placement of 27 months (Mittelman et al. 1996).
Limitations of the Study
The design of this study imposes several limitations on the confidence with which we can interpret and apply its findings. Although the burden inventory used here classifies caregivers' experiences as objective and subjective, all caregivers' responses are actually subjective in that they are self-reported and not validated against external measures such as caregiver's income or use of psychotropic drugs (George 1994). Another limitation of this burden inventory is its assignment of equal weight to each of its items, thus not capturing variations in importance among the items. Additionally, our definition of increased burden (i.e., an increase in TBS 5) was derived from the data on which it was used; it still requires external validation. And finally, our small sample size (
) reduced our ability to detect subtle effects, and the small number of observed events (i.e., increases in caregiver burden) limited the complexity of our explanatory models.
The study's methodologic weaknesses notwithstanding, outpatient GEM appears to protect caregivers of high-risk older people from experiencing increased burden over time. In light of the growing population of informal caregivers, this is good news. Outpatient GEM is a method for providing comprehensive care in which caregivers remain involved in the care of their loved ones and receive protection from the burnout associated with increasing burden. Considering GEM's other demonstrated salutary effects, e.g., on function, affect, and satisfaction at low cost outpatient GEM appears to offer realistic hope for improving the quality of life for the growing number of frail older people and their informal caregivers (Boult, Boult, and Morishita 1999; Burns, Nichols, Graney, and Cloar 1995; Morishita, Boult, Boult, Smith, and Pacala 1998; Rubin, Sizemore, Loftis, and Loret de Mola 1993; Urdangarin, Boult, and Morishita 1999).
Future Trials
In 1991, a working group in a GEM Consensus Development Conference recommended that future trials of GEM include aspects of caregivers' well-being in their evaluation (Hedrick et al. 1991). To our knowledge, this study is the first trial of outpatient GEM to do so. Measuring burden may be difficult for many gerontological studies, especially those not centered on studying caregivers. Burden scales abound, but none have been examined for reliability, validated externally, assessed for cutoffs that indicate practical or clinically significant change, and shown to have feasible application in general geriatric research settings. Given the growing numbers of caregivers and the challenges they will face, however, future trials of all care interventions for frail older adults should evaluate their effects on informal caregivers, if only to ensure that they are not adversely affected. A movement toward this type of evaluation may help to bridge the gap between research focused on caregivers and research focused on frail older adult recipients. Closing this gap may shift the emphasis of geriatric intervention research from the well-being of individuals to the well-being of caregiving relationships.
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Acknowledgments |
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Received for publication June 28, 1999. Accepted for publication December 22, 1999.
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