Is Caregiving a Risk Factor for Mortality?
by Scott R. Beach, Ph.D., and Richard Schulz, Ph.D.| Geriatric Times |  |
May/June 2000 | |
Vol. I | |
Issue 1 |
Researchers have long known that caring for an ill or disabled relative is burdensome and stressful to many individuals, and it can result in psychiatric and physical morbidity. These effects are particularly likely among those with high levels of caregiving demands. Caregivers who live with severely disabled care recipients are at particular risk of developing their own health problems and may be at increased risk for mortality.
Caregiving and Mortality
Researchers typically test for links between a hypothesized risk factor and mortality by identifying a group of individuals, assessing their levels of the risk factor and identifying those who die within a fixed follow-up period. If those who have higher levels of the risk factor at baseline have higher death rates or die sooner than those with lower scores, this is seen as evidence for a link between the particular factor and mortality.
Such studies are seen as more convincing, to the extent that other known correlates of mortality are also controlled in the analysis. Researchers have generally not been able to test for a caregiving-mortality link due to small sample sizes and limited follow-up periods.
The Caregiver Health Effects Study (CHES), an ancillary study of the Cardiovascular Health Study (CHS), provides a unique opportunity to test the caregiving-mortality link. CHS is a large population-based prospective study of the risk factors for, and consequences of, cardiovascular disease in older adults.
The CHES ancillary study was initiated prior to the fourth wave of CHS data collection, to recruit approximately 400 elderly spousal caregivers and 400 noncaregiver spousal controls matched for age and sex. Potential caregivers were defined as individuals whose spouse had difficulty with at least one activity of daily living (ADL) or instrumental activity of daily living (IADL) "due to physical or health problems or problems with confusion." The noncaregiver group consisted of those whose spouse did not have any ADL or IADL difficulties. A total of 819 CHS participants were recruited into the CHES.
In a recent study published in JAMA, Schulz and Beach (1999) used CHES data to test the caregiving-mortality link. Upon entry into the study, participants were classified into one of four caregiving groups: 1) spouse not disabled (i.e., control subjects, n=427); 2) spouse disabled but not helping (n=75); 3) spouse disabled and helping, but with no reports of mental or physical caregiving strain (n=138); and 4) spouse disabled and helping, and reports of caregiving strain (n=179). This classification was intended to capture increasing levels of caregiving demands. Participants were followed for an average of four years with 100% ascertainment of mortality status. Sociodemographic factors (age, sex, race, education, stressful life events) were controlled.
Physical health status was additionally controlled by classifying
participants into one of three groups: 1) prevalent cardiovascular disease:
those with confirmed diagnoses of at least one of six conditions (myocardial
infarction, angina pectoris, congestive heart failure, intermittent
claudication, stroke, transient ischemic attack); 2) subclinical cardiovascular
disease: those with no prevalent disease but with at least one of five
subclinical indicators (claudication or angina by Rose Questionnaire, ankle to
arm blood pressure ratio 
0.90, major electrocardiogram
abnormality, carotid stenosis); and 3) neither prevalent nor subclinical
disease. Cox regression was used to model the effects of caregiving status
(entered as three dummy variables with the control group as the referent) on
four-year all-cause mortality after adjusting for sociodemographic factors and
physical health.
After four years of follow-up, 103 deaths (12.6%) occurred among the total sample. The major finding of the study was that once sociodemographic factors and physical health status were adjusted for, participants who were helping a disabled spouse and reported caregiving strain had mortality risks that were 63% higher than the control group (RR=1.63, 95% CI, 1.00 to 2.65). Those who were not helping a disabled spouse, or who were helping but not experiencing strain, did not have higher adjusted mortality rates than control participants. Thus, the study suggests that being an elderly spousal caregiver who experiences mental or physical strain is an independent risk factor for mortality.
Follow-up analyses suggested that the effects of strained caregiving may be particularly lethal among those who are already physically compromised.
Implications for Physicians
Our results apply to older, stressed, married caregivers living with their spouse. Since both caregivers and care-recipients are likely to have chronic health problems that bring them into contact with the health care system, physicians are in position to identify caregivers at risk for mortality.
We recommend that geriatric patients be systematically screened for caregiving strain. This can be done relatively easily by asking two types of questions:
- Is the individual providing care to their spouse on a daily basis due to health-related disabilities of their spouse?
- Is providing care a physical or mental strain on them?
Health care professionals may wish to further probe for depressive symptoms in the patient, a common consequence of caregiving, using an instrument such as the abbreviated Center for Epidemiologic Studies-Depression Inventory (CES-D) (Radloff, 1977). This provides additional information on the degree of caregiver stress. The combination of being a strained caregiver and high levels of depressive symptomatology (e.g., a score of eight or higher on the 10-item CES-D) should alert the physician to possible negative sequelae for the patient. Detailed exploration of the types of assistance required by the disabled spouse viewed in the context of the caregiver's health and functional status, will help inform the intervention strategy.
Once an individual at risk has been identified, a number of intervention options are available. The caregiver should be made aware that the demands of caregiving can be overwhelming and may challenge an individual's ability to cope effectively. The caregiver should be encouraged to monitor their own behavior for signs of distress, including excessive depression, inability to sleep, not being able to rest when ill, failing to make or keep doctors' appointments, and being unable to engage in restorative leisure activities. It may be possible to recruit another family member to help care for the patient and give respite to the caregiver.
Caregivers should be encouraged to take advantage of in-home and institutional respite care and in-home health services for the care-recipient to ease the burden. The physician could prescribe such services. Under extreme circumstance, a health care provider could help the caregiver with institutional placement for the care-recipient, such as an assisted-living or skilled-nursing facility.
In general, we strongly advocate that older married couples be viewed as a unit rather than two separate individuals for purposes of monitoring their health status and developing an effective care plan. It is important to consider the impact of one spouse's health status and functioning on the other. Similarly, when prescribing a treatment regimen for a spouse, it is essential to keep in mind its effects and the demands it places on the partner.
Dr. Beach is director of survey research in the University Center for Social and Urban Research at the University of Pittsburgh.
Dr. Schulz is director of the University Center for Social and Urban Research at the University of Pittsburgh.
References
Radloff L (1977), The CES-D Scale: A self-report depression scale for research in the general population. Applied Psychological Measurement 1:385-401.
Schulz R, Beach SR (1999), Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA 282(23):2215-2219 [see comments].