@article {1506, title = {Health effects of caregiving: the caregiver health effects study: an ancillary study of the Cardiovascular Health Study.}, journal = {Ann Behav Med}, volume = {19}, year = {1997}, month = {1997 Spring}, pages = {110-6}, abstract = {

We propose that two related sources of variability in studies of caregiving health effects contribute to an inconsistent pattern of findings: the sampling strategy used and the definition of what constitutes caregiving. Samples are often recruited through self-referral and are typically comprised of caregivers experiencing considerable distress. In this study, we examine the health effects of caregiving in large population-based samples of spousal caregivers and controls using a wide array of objective and self-report physical and mental health outcome measures. By applying different definitions of caregiving, we show that the magnitude of health effects attributable to caregiving can vary substantially, with the largest negative health effects observed among caregivers who characterize themselves as being strained. From an epidemiological perspective, our data show that approximately 80\% of persons living with a spouse with a disability provide care to their spouse, but only half of care providers report mental or physical strain associated with caregiving.

}, keywords = {Activities of Daily Living, Aged, Arousal, Cardiovascular Diseases, Caregivers, Cerebrovascular Disorders, Coronary Disease, Cost of Illness, Female, Geriatric Assessment, Health Behavior, Health Status, Humans, Male, Psychophysiologic Disorders, Risk Factors, Spouses, Stress, Psychological}, issn = {0883-6612}, doi = {10.1007/BF02883327}, author = {Schulz, R and Newsom, J and Mittelmark, M and Burton, L and Hirsch, C and Jackson, S} } @article {1477, title = {Preventive health behaviors among spousal caregivers.}, journal = {Prev Med}, volume = {26}, year = {1997}, month = {1997 Mar-Apr}, pages = {162-9}, abstract = {

BACKGROUND: The physical and emotional burden of caring for a functionally impaired spouse may adversely affect the preventive health behavior of the caregiver. This study explores the relationship between caregiving and lifestyle health behaviors and use of preventive services.

METHODS: The Caregiver Health Effects Study identified spousal caregivers among a sample of more than 3,000 married, community-dwelling older persons, from four counties in the United States, who were enrollees in the Cardiovascular Health Study. High-level caregivers were defined as having a spouse with an ADL impairment (n = 212) and moderate-level caregivers, a spouse with one or more IADL impairments (n = 222). For each caregiver, a control, matched for age and gender, was selected (n = 385). Structured interviews were conducted in the home, following enrollment.

RESULTS: Being a high-level caregiver significantly increased the odds of not getting enough rest, not having enough time to exercise, not having time to rest to recuperate from illness, and forgetting to take prescription medications, compared with noncaregivers. These findings did not hold for moderate-level caregivers. The odds were not significantly different for either level of caregiver compared with noncaregivers for missing meals, missing doctor appointments, missing flu shots, and not refilling medications. Larger proportions of caregivers with a strong sense of control had good preventive health behaviors, compared with caregivers with a weak sense of control.

}, keywords = {Activities of Daily Living, Aged, Aged, 80 and over, Analysis of Variance, Caregivers, Case-Control Studies, Chi-Square Distribution, Confidence Intervals, Exercise, Female, Health Behavior, Health Status, Health Surveys, Humans, Internal-External Control, Life Style, Logistic Models, Male, Odds Ratio, Preventive Health Services, Self Care, Social Support, Spouses, United States}, issn = {0091-7435}, doi = {10.1006/pmed.1996.0129}, author = {Burton, L C and Newsom, J T and Schulz, R and Hirsch, C H and German, P S} } @article {1501, title = {Caregiving from the recipient{\textquoteright}s perspective: negative reactions to being helped.}, journal = {Health Psychol}, volume = {17}, year = {1998}, month = {1998 Mar}, pages = {172-81}, abstract = {

This study investigated predictors of negative reactions to assistance provided to a physically disabled spouse (n = 276, M age: 76.6 years) and the consequences that negative reactions may have for the mental health of the care recipient. Nearly 40\% of recipients reported some emotional distress in response to help they received. Fatalistic attitudes, perceived control, and lower self-esteem predicted greater helping distress, whereas lower self-esteem, fatalistic beliefs, and marital conflict were especially likely to lead to helping distress for those who received higher levels of assistance. Helping distress was also found to predict depression as much as 1 year later, suggesting that there may be long-term consequences of negative reactions to assistance. These findings have important implications for the study of caregiving and the relationship between physical impairment and depression.

}, keywords = {Activities of Daily Living, Aged, Caregivers, Chronic Disease, Depression, Disabled Persons, Factor Analysis, Statistical, Female, Helping Behavior, Humans, Internal-External Control, Longitudinal Studies, Male, Regression Analysis, Self Concept, Spouses, United States}, issn = {0278-6133}, author = {Newsom, J T and Schulz, R} } @article {1505, title = {The role of neuroticism and mastery in spouse caregivers{\textquoteright} assessment of and response to a contextual stressor.}, journal = {J Gerontol B Psychol Sci Soc Sci}, volume = {53}, year = {1998}, month = {1998 May}, pages = {P155-64}, abstract = {

Data from more than 300 spousal caregivers and their care recipients were analyzed to demonstrate the effects of caregivers{\textquoteright} personality attributes--neuroticism and mastery--on their assessment of a contextual stressor (the care recipient{\textquoteright}s behavioral and functional impairment) and on their experience of distress associated with that stressor. Caregivers who were high in neuroticism and/or low in mastery reported higher levels of behavioral and functional impairment in their disabled spouse and experienced more strain and depressive symptoms associated with caregiving relative to caregivers with lower neuroticism or higher mastery scores. We further showed that the widely reported association between caregiver-assessed impairment of the care recipient and caregiver outcomes can in part be explained by caregivers{\textquoteright} personality attributes, such as neuroticism and mastery. Our findings that caregivers{\textquoteright} personality variables are related to their assessment of a given objective stressor and their response to a given level of stress have implications for interventions targeting caregivers and for the use of caregivers as proxy informants.

}, keywords = {Aged, Caregivers, Depression, Female, Humans, Male, Neurotic Disorders, Personality, Personality Assessment, Stress, Psychological}, issn = {1079-5014}, author = {Bookwala, J and Schulz, R} } @article {605, title = {Caregiving as a risk factor for mortality: the Caregiver Health Effects Study.}, journal = {JAMA}, volume = {282}, year = {1999}, month = {1999 Dec 15}, pages = {2215-9}, abstract = {

CONTEXT: There is strong consensus that caring for an elderly individual with disability is burdensome and stressful to many family members and contributes to psychiatric morbidity. Researchers have also suggested that the combination of loss, prolonged distress, the physical demands of caregiving, and biological vulnerabilities of older caregivers may compromise their physiological functioning and increase their risk for physical health problems, leading to increased mortality.

OBJECTIVE: To examine the relationship between caregiving demands among older spousal caregivers and 4-year all-cause mortality, controlling for sociodemographic factors, prevalent clinical disease, and subclinical disease at baseline.

DESIGN: Prospective population-based cohort study, from 1993 through 1998 with an average of 4.5 years of follow-up.

SETTING: Four US communities.

PARTICIPANTS: A total of 392 caregivers and 427 noncaregivers aged 66 to 96 years who were living with their spouses.

MAIN OUTCOME MEASURE: Four-year mortality, based on level of caregiving: (1) spouse not disabled; (2) spouse disabled and not helping; (3) spouse disabled and helping with no strain reported; or(4) spouse disabled and helping with mental or emotional strain reported.

RESULTS: After 4 years of follow-up, 103 participants (12.6\%) died. After adjusting for sociodemographic factors, prevalent disease, and subclinical cardiovascular disease, participants who were providing care and experiencing caregiver strain had mortality risks that were 63\% higher than noncaregiving controls (relative risk [RR], 1.63; 95\% confidence interval [CI], 1.00-2.65). Participants who were providing care but not experiencing strain (RR, 1.08; 95 \% CI, 0.61-1.90) and those with a disabled spouse who were not providing care (RR, 1.37; 95\% CI, 0.73-2.58) did not have elevated adjusted mortality rates relative to the noncaregiving controls.

CONCLUSIONS: Our study suggests that being a caregiver who is experiencing mental or emotional strain is an independent risk factor for mortality among elderly spousal caregivers. Caregivers who report strain associated with caregiving are more likely to die than noncaregiving controls.

}, keywords = {Activities of Daily Living, Aged, Aged, 80 and over, Caregivers, Disabled Persons, Female, Health Status, Home Nursing, Humans, Male, Mortality, Proportional Hazards Models, Prospective Studies, Risk Factors, Socioeconomic Factors, Spouses, Stress, Psychological, United States}, issn = {0098-7484}, doi = {10.1001/jama.282.23.2215}, author = {Schulz, R and Beach, S R} } @article {627, title = {A comparison of primary stressors, secondary stressors, and depressive symptoms between elderly caregiving husbands and wives: the Caregiver Health Effects Study.}, journal = {Psychol Aging}, volume = {15}, year = {2000}, month = {2000 Dec}, pages = {607-16}, abstract = {

The present study examined gender differences in the experience of primary and secondary caregiving stressors, depressive symptoms, and their interrelationships using a sample of 283 elderly spouse caregivers (145 women, 138 men). Two primary stressors, two secondary stressors, and depressive symptoms were assessed. In general, t-tests indicated that caregiving husbands experience fewer stressors and depressive symptoms than their female counterparts. Multiple group analysis revealed that the primary stressors were more useful in explaining variance associated with the secondary stressors for women than men and that the path coefficients linking amount of caregiving assistance to caregivers{\textquoteright} activity restriction was significantly different across men and women. Other paths linking primary stressors, secondary stressors, and depressive symptoms, however, were statistically equivalent across men and women. Hence, although caregiving women and men may vary in their reports of caregiving stressors, the complexity of the caregiving experience appears to be quite uniform for both groups.

}, keywords = {Aged, Aging, Caregivers, Depressive Disorder, Female, Health Status, Humans, Male, Spouses, Stress, Psychological}, issn = {0882-7974}, doi = {10.1037//0882-7974.15.4.607}, author = {Bookwala, J and Schulz, R} } @article {619, title = {Negative and positive health effects of caring for a disabled spouse: longitudinal findings from the caregiver health effects study.}, journal = {Psychol Aging}, volume = {15}, year = {2000}, month = {2000 Jun}, pages = {259-71}, abstract = {

Data from the first 2 waves of the Caregiver Health Effects Study (n = 680) were analyzed to examine the effects of changes in caregiving involvement on changes in caregiver health-related outcomes in a population-based sample of elders caring for a disabled spouse. Caregiving involvement was indexed by levels of (a) spouse physical impairment, (b) help provided to the spouse, and (c) strain associated with providing help. Health-related outcomes included perceived health, health-risk behaviors, anxiety symptoms, and depression symptoms. Increases in spouse impairment and caregiver strain were generally related to poorer outcomes over time (poorer perceived health, increased health-risk behaviors, and increased anxiety and depression), whereas increased helping was related to better outcomes (decreased anxiety and depression). Results suggest that caring for a disabled spouse is a complex phenomenon that can have both deleterious and beneficial consequences.

}, keywords = {Aged, Anxiety, Caregivers, Depression, Disabled Persons, Female, Health Behavior, Health Status, Humans, Longitudinal Studies, Male, Mental Health, Risk-Taking, Spouses}, issn = {0882-7974}, doi = {10.1037//0882-7974.15.2.259}, author = {Beach, S R and Schulz, R and Yee, J L and Jackson, S} } @article {653, title = {Involvement in caregiving and adjustment to death of a spouse: findings from the caregiver health effects study.}, journal = {JAMA}, volume = {285}, year = {2001}, month = {2001 Jun 27}, pages = {3123-9}, abstract = {

CONTEXT: Most deaths in the United States occur among older persons who have 1 or more disabling conditions. As a result, many deaths are preceded by an extended period during which family members provide care to their disabled relative.

OBJECTIVE: To better understand the effect of bereavement on family caregivers by examining predeath vs postdeath changes in self-reported and objective health outcomes among elderly persons providing varying levels of care prior to their spouse{\textquoteright}s death.

DESIGN AND SETTING: Prospective, population-based cohort study conducted in 4 US communities between 1993 and 1998.

PARTICIPANTS: One hundred twenty-nine individuals aged 66 to 96 years whose spouse died during an average 4-year follow-up. Individuals were classified as noncaregivers (n = 40), caregivers who reported no strain (n = 37), or strained caregivers (n = 52).

MAIN OUTCOME MEASURES: Changes in depression symptoms (assessed by the 10-item Center for Epidemiological Studies-Depression [CES-D] scale), antidepressant medication use, 6 health risk behaviors, and weight among the 3 groups of participants.

RESULTS: Controlling for age, sex, race, education, prevalent cardiovascular disease at baseline, and interval between predeath and postdeath assessments, CES-D scores remained high but did not change among strained caregivers (9.44 vs 9.19; P =.76), while these scores increased for both noncaregivers (4.74 vs 8.25; F(1,116) = 14.33; P<.001) and nonstrained caregivers (4.94 vs 7.13; F(1,116) = 4.35; P =.04). Noncaregivers were significantly more likely to be using nontricyclic antidepressant medications following the death than the nonstrained caregiver group (odds ratio [OR], 12.85; 95\% confidence interval [CI], 1.02-162.13; P =.05). The strained caregiver group experienced significant improvement in health risk behaviors following the death of their spouse (1.47 vs 0.66 behaviors; F(1,118) = 20.23; P<.001), while the noncaregiver and nonstrained caregiver groups showed little change (0.27 vs 0.27 [P =.99] and 0.46 vs 0.27 [P =.39] behaviors, respectively). Noncaregivers experienced significant weight loss following the death (149.1 vs 145.3 lb [67.1 vs 65.4 kg]; F(1,101) = 8.12; P =.005), while the strained and nonstrained caregiving groups did not show significant weight change (156.2 vs 155.2 lb [70.3 vs 69.8 kg] [P =.41] and 156.2 vs 154.0 lb [70.3 vs 69.3 kg] [P =.12], respectively).

CONCLUSIONS: These data indicate that the impact of losing one{\textquoteright}s spouse among older persons varies as a function of the caregiving experiences that precede the death. Among individuals who are already strained prior to the death of their spouse, the death itself does not increase their level of distress. Instead, they show reductions in health risk behaviors. Among noncaregivers, losing one{\textquoteright}s spouse results in increased depression and weight loss.

}, keywords = {Aged, Aged, 80 and over, Antidepressive Agents, Bereavement, Caregivers, Death, Depression, Female, Follow-Up Studies, Health Behavior, Humans, Male, Socioeconomic Factors, Spouses, Weight Loss}, issn = {0098-7484}, doi = {10.1001/jama.285.24.3123}, author = {Schulz, R and Beach, S R and Lind, B and Martire, L M and Zdaniuk, B and Hirsch, C and Jackson, S and Burton, L} } @article {751, title = {Perceptions and implications of received spousal care: evidence from the Caregiver Health Effects Study.}, journal = {Psychol Aging}, volume = {18}, year = {2003}, month = {2003 Sep}, pages = {593-601}, abstract = {

The experiences of older care recipients have received far less theoretical and empirical attention than those of their family caregivers. In this study of 91 care recipients, the authors assessed perceptions of the amount, timing, and manner of spousal assistance; the amount of strain experienced from receiving care; and psychological well-being. Although female care recipients were more likely to report dissatisfaction with the manner in which assistance was provided, there were few gender differences in perceptions of care overall. In a stringent test of the hypothesis that perceived quality of spousal care affects recipient well-being, the authors found that poorer quality of care was related to increased depressive symptoms and a decreased sense of mastery 1 year later. These longitudinal effects were independent of the recipient{\textquoteright}s physical disability, marital quality, and care-receiving strain as well as the caregiver{\textquoteright}s well-being. These findings argue for a comprehensive assessment of the care-receiving experience that includes both care-recipient and caregiver perspectives.

}, keywords = {Aged, Caregivers, Chronic Disease, Disabled Persons, Family Health, Female, Health Status, Humans, Longitudinal Studies, Male, Mental Health, Quality of Health Care, Research Design, Spouses}, issn = {0882-7974}, doi = {10.1037/0882-7974.18.3.593}, author = {Martire, Lynn M and Schulz, Richard and Wrosch, Carsten and Newsom, Jason T} } @article {732, title = {Transitions in spousal caregiving.}, journal = {Gerontologist}, volume = {43}, year = {2003}, month = {2003 Apr}, pages = {230-41}, abstract = {

PURPOSE: This study describes transitions over 5 years among community-dwelling elderly spouses into and within caregiving roles and associated health outcomes.

DESIGN AND METHODS: Participants in the Caregiver Health Effects Study (n = 818) were interviewed four times over 5 years with changes in their caregiving status described. Analyses of the effect on health outcomes of transitions were performed on those for whom four observations were available (n = 428).

RESULTS: Only half (49.5\%) of noncaregivers at baseline remained noncaregivers at 5-year follow-up. The remainder experienced one or more transitions, including moving into the caregiving role, their own or their spouse{\textquoteright}s death, or placement of their spouse in a long-term care facility. The trajectory of health outcomes associated with caregiving was generally downward. Those who transitioned to heavy caregiving had more symptoms of depression, and poorer self-reported health and health behaviors.

IMPLICATIONS: Transitions into and within the caregiving role should be monitored for adverse health effects on the caregiver, with interventions tailored to the individual{\textquoteright}s location in the caregiving trajectory.

}, keywords = {Adaptation, Psychological, Aged, Aged, 80 and over, Caregivers, Female, Health Behavior, Health Status, Humans, Long-Term Care, Male, Residence Characteristics, Spouses, Stress, Psychological, Time Factors}, issn = {0016-9013}, doi = {10.1093/geront/43.2.230}, author = {Burton, Lynda C and Zdaniuk, Bozena and Schulz, Richard and Jackson, Sharon and Hirsch, Calvin} } @article {767, title = {Concurrent and long-term predictors of older adults{\textquoteright} use of community-based long-term care services: the Caregiver Health Effects Study.}, journal = {J Aging Health}, volume = {16}, year = {2004}, month = {2004 Feb}, pages = {88-115}, abstract = {

OBJECTIVE: This study examined concurrent and long-term associations between caregiver-related characteristics and the use of community long-term care services in a sample of 186 older adults caring for a disabled spouse.

METHOD: We used two waves of data from the Caregiver Health Effects Study, an ancillary study of the Cardiovascular Health Study. Caregiver-related need variables as predictors of service use were of primary interest and included caregiving demands, caregiver mental and physical health, and mastery. Their contribution to service use was examined after controlling for known predictors of service use.

RESULTS: At Time 1, more caregiver depressive symptoms predicted greater service use; at Time 2, more caregiver activity restriction and depressive symptoms predicted greater formal service use; increases in caregiver activity restriction and depressive symptomatology over time predicted increases in service use.

DISCUSSION: Caregiver-related need variables play a significant role in defining utilization patterns of community-based long-term care services among older adults.

}, keywords = {Aged, Caregivers, Community Health Services, Disabled Persons, Forecasting, Health Services for the Aged, Humans, Long-Term Care, Regression Analysis, Spouses, United States}, issn = {0898-2643}, doi = {10.1177/0898264303260448}, author = {Bookwala, Jamila and Zdaniuk, Bozena and Burton, Lynda and Lind, Bonnie and Jackson, Sharon and Schulz, Richard} } @article {1102, title = {Spousal suffering and partner{\textquoteright}s depression and cardiovascular disease: the Cardiovascular Health Study.}, journal = {Am J Geriatr Psychiatry}, volume = {17}, year = {2009}, month = {2009 Mar}, pages = {246-54}, abstract = {

OBJECTIVES: To assess the effects of suffering in a spouse on prevalent and incident psychiatric (depression) and physical morbidity (cardiovascular disease [CVD]) in their partner, controlling for known risk factors for depression and CVD.

DESIGN: Descriptive longitudinal study.

PARTICIPANTS: A total of 1,330 older married couples enrolled in the Cardiovascular Health Study, a large epidemiologic study of the elderly.

MEASUREMENTS: Predictor variables were physical, psychological, and existential/spiritual indicators of suffering. Primary outcomes were prevalent and incident depression and CVD.

RESULTS: Controlling for known risk factors for depression, the authors found a dose-response relationship between suffering in a spouse and concurrent depression in their partner as well as a relationship between suffering and the partner{\textquoteright}s future risk for depression. With respect to CVD, and controlling for subclinical CVD at baseline, husbands whose wives reported high levels of suffering also had higher rates of prevalent CVD, but there were no significant associations between wives suffering and husbands incident CVD. There were no associations between husbands{\textquoteright} suffering and wives{\textquoteright} prevalent or incident CVD.

CONCLUSION: Exposure to spousal suffering is an independent and unique source of distress in married couples that contributes to psychiatric and physical morbidity. More attention should be paid to the interpersonal effects of suffering in married couples and to its role in contributing to morbidity.

}, keywords = {Activities of Daily Living, Aged, Cardiovascular Diseases, Caregivers, Depression, Female, Follow-Up Studies, Humans, Incidence, Logistic Models, Longitudinal Studies, Male, Prevalence, Risk Factors, Socioeconomic Factors, Spouses, Stress, Psychological, Surveys and Questionnaires}, issn = {1545-7214}, doi = {10.1097/JGP.0b013e318198775b}, author = {Schulz, Richard and Beach, Scott R and Hebert, Randy S and Martire, Lynn M and Monin, Joan K and Tompkins, Connie A and Albert, Steven M} }