Spouses, adult children, and children-in-law as caregivers of older adults: A meta-analytic comparison.

The present meta-analysis integrates the results from 168 empirical studies on differences between caregiving spouses, adult children, and children-in-law. Spouses differ from children and children-in-law significantly with regard to sociodemographic variables; also, they provide more support but report fewer care recipient behavior problems. Spouse caregivers report more depression symptoms, greater financial and physical burden, and lower levels of psychological well-being. Higher levels of psychological distress among spouses are explained mostly—but not completely—by higher levels of care provision. Few differences emerge between children and children-in-law, but children-in-law perceive the relationship with the care recipient as less positive and they report fewer uplifts of caregiving. (PsycINFO Database Record (c) 2011 APA, all rights reserved)     

Compound caregiving: When lifelong caregivers undertake additional caregiving roles.

Objective: Lifetime parental caregivers of adults with intellectual disabilities (ID) may also become caregivers to other family members. This study investigated caregiver experiences of compound caregiving (i.e. additional caregiving roles) and its association with caregiver quality of life. Participants: Ninety-one older caregivers living with their adult son/daughter with ID were interviewed. Mean age of the caregivers was 60 years and their sons'/daughters' mean age was 29 years. Main Outcome Measures: Compound caregiving status, physical and mental health, life satisfaction, depressive symptomatology, and desire for alternative residential placement for their co-residing son/daughter. Results: Thirty-four (37%) reported being current compound caregivers to an additional care recipient, predominantly a mother, father, or spouse. Caregivers averaged 39 hours per week fulfilling their primary caregiving tasks, an additional 12 hours per week on the compound caregiving role, and the median duration of compound caregiving was 3 years. Compared with the non-compound caregivers, the compound caregivers had increased desire to place their son/daughter into residential care, though no group differences were apparent in life satisfaction, depressive symptomatology, physical health, or mental health. The most problematic issues reported by compound caregivers were having little personal time and a lack of adequate help from others. Conclusion: Compound caregiving was often experienced, and may galvanize these lifetime caregivers to start making future plans for their sons/daughters. Future research is warranted to refine more homogeneous groupings of compound caregivers, who may be at greater risk for adverse outcomes. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Depression and quality of informal care: A longitudinal investigation of caregiving stressors.

This research examined longitudinal associations between caregiving stressors, caregiver depression, and quality of care. Informal caregivers of elderly care recipients were interviewed at baseline (N = 310) and again one year later (N = 213). Hierarchical regression analyses indicated that increases in caregiving stressors (i.e., caregiver physical health symptoms, caregiver activity restriction, and care recipient controlling and manipulative behavior) were related to increased caregiver depression. In turn, increased caregiver depression and decreased caregiver respectful behavior predicted increases in potentially harmful behavior. These results extend previous cross-sectional findings and indicate that changes in caregiving stressors, caregiver depression, and caregiver respect over time may signal that intervention is warranted in order to forestall or prevent poor quality of care. (PsycINFO Database Record (c) 2011 APA, all rights reserved)     

Willingness to express emotions to caregiving spouses.

This study examined the association between care-recipients' willingness to express emotions to spousal caregivers and caregiver's well-being and support behaviors. Using self-report measures in the context of a larger study, 262 care-recipients with osteoarthritis reported on their willingness to express emotions to caregivers, and caregivers reported on their stress and insensitive responding to care-recipients. Results revealed that care-recipients' willingness to express happiness was associated with less insensitive caregiver responding, and willingness to express interpersonal emotions (e.g., compassion, guilt) was associated with less caregiving stress. There were also gender differences, such that caregiving wives, in particular, benefited from their husband's willingness to express vulnerable (e.g., anxiety, sadness) and interpersonal emotions. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

The longitudinal ramifications of stroke caregiving: A systematic review.

Family members assume considerable care responsibilities for relatives suffering from stroke. Although a number of quantitative and qualitative studies examine the emotional and psychological ramifications of stroke caregiving, no recent review has considered the longitudinal implications of family stroke care. The goal of this systematic review was to determine whether duration of family care is a significant predictor of stroke caregiving outcomes and if stroke caregiving outcomes change over time. PsycINFO (1950 to 2009), MEDLINE (1966 to 2009), and CINAHL (1982 to 2009) databases were searched to identify relevant research articles. Reference lists of selected articles were also hand searched. Of 1,188 studies identified, 117 were selected for review based on eligibility criteria. Synthesized results found that duration of care did not emerge as a significant predictor of stroke caregiving outcomes in most cross-sectional quantitative studies. Caregiver stress, depression, and subjective health measures did not tend to demonstrate significant change in longitudinal quantitative studies (although some studies did indicate increases and/or decreases in well-being over time). Qualitative studies describe a more dynamic stroke caregiving process. The results of this review emphasize the need to apply more rigorous research approaches, appropriate theories, and mixed-method designs to advance the state-of-the-art. Such improvements will provide practitioners with stronger evidence to guide the development, targeting, and timing of clinical interventions. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Informal care can be better than adequate: Development and evaluation of the Exemplary Care Scale.

Purpose: To evaluate a new measure assessing excellent, or exemplary, informal care--an aspect of caregiving that has received little attention. The Exemplary Care Scale (ECS) was developed on the basis of insights from previous research with items generated by the authors in consultation with a multidisciplinary research team. Design: 310 informal caregivers and 283 of their elderly care recipients completed the ECS and other measures pertaining to quality of care and its presumed correlates. Results: Factor analyses indicated that the ECS consists of 2 factors reflecting provision of exceptional care (Provide) and respect for care recipient autonomy, wishes, and the like (Respect). The ECS factor structure was equivalent among caregivers and care recipients. Both factors were empirically distinct from existing measures of poor quality and adequate care. Each ECS factor was associated with other care-related constructs in predictable ways, implying construct validity. Conclusions: The ECS, in conjunction with existing measures, provides a more comprehensive assessment of the quality-of-care continuum and should prove useful to researchers and practitioners interested in quality of informal care provided to chronically ill or disabled people. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

The four-factor model of depressive symptoms in dementia caregivers: A structural equation model of ethnic differences.

Previous studies have suggested that 4 latent constructs (depressed affect, well-being, interpersonal problems, somatic symptoms) underlie the item responses on the Center for Epidemiological Studies Depression (CES-D) Scale. This instrument has been widely used in dementia caregiving research, but the fit of this multifactor model and the explanatory contributions of multifactor models have not been sufficiently examined for caregiving samples. The authors subjected CES-D data (N = 1,183) from the initial Resources for Enhancing Alzheimer's Caregiver Health Study to confirmatory factor analysis methods and found that the 4-factor model provided excellent fit to the observed data. Invariance analyses suggested only minimal item-loading differences across race subgroups and supported the validity of race comparisons on the latent factors. Significant race differences were found on 3 of the 4 latent factors both before and after controlling for demographic covariates. African Americans reported less depressed affect and better well-being than White caregivers, who reported better well-being and fewer interpersonal problems than Hispanic caregivers. These findings clarify and extend previous studies of race differences in depression among diverse samples of dementia caregivers. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Does a helping hand mean a heavy heart? Helping behavior and well-being among spouse caregivers.

Being a caregiver for an ill or disabled loved one is widely recognized as a threat to the caregiver’s quality of life. Nonetheless, research indicates that helping behavior, broadly construed, promotes well-being. Could helping behavior in a caregiving context promote well-being as well? In the present study, we used ecological momentary assessment to measure active helping behavior and both positive and negative affect in 73 spouse caregivers. Results indicate that when controlling for care recipient illness status and functional impairment and caregiver “on call” caregiving time, active helping predicted greater caregiver positive affect—especially for individuals who perceived themselves as interdependent with their spouse. In addition, although both helping and on-call time predicted greater negative affect for caregivers who perceived low interdependence, helping was unrelated to negative affect among caregivers perceiving high interdependence. Helping valued loved ones may promote caregivers’ well-being. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

The onset of dementia caregiving and its longitudinal implications.

This study examined patterns of entry into the caregiving role and how onset influences outcomes pertinent to the caregiving process. Using 3-year longitudinal data, the present analysis classified dementia caregivers into 1 of 4 onset sequences: those whose entry into caregiving was defined by diagnosis, those who first recognized symptoms and then obtained a diagnosis, those caregivers who first recognized symptoms and then provided care, and those who provided care prior to diagnosis or recognition. Analyses revealed that respondents who experienced a less abrupt entry into caregiving were less likely to institutionalize their relatives and reported greater decreases in well-being. The findings point to the dynamic process that defines entry into caregiving and emphasize that how individuals assume caregiving roles have implications long after onset. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

The psychosocial impact of caregiving on young people who have a parent with an illness or disability: Comparisons between young caregivers and noncaregivers.

Objective: To investigate the psychosocial impact of young caregiving by empirically validating prominent qualitative themes. This was achieved through developing an inventory called the Young Caregiver of Parents Inventory (YCOPI) designed to assess these themes and by comparing young caregivers and noncaregivers. Method: Two hundred forty-five participants between 10 and 25 years completed questionnaires: 100 young caregivers and 145 noncaregivers. In addition to the YCOPI, the following variables were measured: demographics, caregiving context, social support, appraisal, coping strategies, and adjustment (health, life satisfaction, distress, positive affect). Results: Eight reliable factors emerged from the YCOPI that described the diverse impacts of caregiving and reflected the key themes reported in prior research. The factors were related to most caregiving context variables and theoretically relevant stress and coping variables. Compared with noncaregivers, young caregivers reported higher levels of young caregiving impact, less reliance on problem-solving coping, and higher somatization and lower life satisfaction. Conclusions: Findings delineate key impacts of young caregiving and highlight the importance of ensuring that measures used in research on young caregivers are sensitive to issues pertinent to this population. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Positive aspects of caregiving as a moderator of treatment outcome over 12 months.

The authors examined the influence of positive aspects of caregiving (PAC) as a moderator of treatment outcome across 12 months in 1 of the original sites of the Resources for Enhancing Alzheimer's Caregiver Health I project. They used multilevel random coefficients regression analysis to predict time-varying PAC, depression, behavioral bother, and daily care burden in Alzheimer's caregivers (N = 243; mean age = 60.89, SD = 14.19). They found that time-varying PAC was predicted by time-varying daily care burden. They also found significant effects of time-varying PAC for depression, behavioral bother, and daily care burden. Notably, a PAC × Phase × Treatment effect was found for daily care burden, such that individuals who endorsed less PAC benefited most from the intervention across 12 months. The tendency to positively appraise the caregiving experience (i.e., PAC) in response to chronic stressors such as Alzheimer's caregiving may affect individuals' responsiveness to, and benefit from, interventions, whereas only daily care burden affected the tendency to find enjoyment in caregiving across 12 months. Future intervention research should assess individual PAC in order to better tailor interventions to caregiving needs. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Improving the quality of life of caregivers of persons with spinal cord injury: A randomized controlled trial.

Objective: To assess the efficacy of two psychosocial interventions for caregivers of older persons with spinal cord injury (SCI). Design: A multisite, three-group, randomized controlled trial comparing two active intervention conditions with each other and to an information-only control group. One hundred seventy-three caregiver and care-recipient dyads were randomly assigned to one of three conditions: a caregiver-only treatment condition in which caregivers received a multicomponent intervention based on their risk profile; a dual-target condition in which the caregiver intervention was complemented by a treatment targeting the care recipient, designed to address both caregiver and care recipient risk factors; and an information-only control condition in which the caregiver received standard printed information about caregiving, SCI, and aging. Outcome Measures: A multivariate outcome comprised of six indicators linked to the goals of the interventions was the primary outcome of the study. The multivariate outcome included measures of depressive symptoms, burden, social support and integration, self-care problems, and physical health symptoms. Results: At 12 months, caregivers in the dual-target condition had improved quality of life as measured by our multivariate outcome when compared to the control condition. Using the dyad as the unit of analysis, the dual-target condition was superior to both the control condition and the caregiver-only condition in our multivariate outcomes analysis. Dyads enrolled in the dual-target condition had significantly fewer health symptoms than control condition and caregiver-only condition participants and were less depressed when compared to participants in the caregiver-only condition. In follow-up analyses we found that a higher proportion of caregivers in the dual-target condition had clinically significant improvements in depression, burden, and health symptoms when compared with the caregiver-only condition. Conclusion: Caregivers are in need of and can benefit from interventions that help them manage the medical and functional limitations of the care recipient. Intervention strategies that target both the caregiver and care recipient are particularly promising strategies for improving the quality of life of caregivers. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

The effect of multiple roles on caregiver stress outcomes.

Some caregivers focus exclusively on the caregiving role; others try to balance caregiving responsibilities with a simultaneous work role outside the home. This study examined competing hypotheses about the impact that greater immersion in a work role would have on the stress outcomes of individuals who provide care for a person with a disability. The authors used national survey data to examine whether hours of work were associated with caregiver stress outcomes. The authors also investigated whether type of disability moderated the relationship between hours worked and stress outcomes. Results suggest that spending more time in a work role generally has no effect on caregiver stress outcomes. However, caregivers who were caring for a person with a mental disability experienced significantly fewer stress outcomes as they spent more hours engaged in outside work. (PsycINFO Database Record (c) 2011 APA, all rights reserved)     

Long-term caregiving: What happens when it ends?

Data from a longitudinal study were used to examine what happens to caregivers in the years after their cognitively impaired spouse dies. Comparisons of 42 current caregivers, 49 former caregivers, and 52 noncaregivers over a 4-year period showed that former caregivers did not improve on several measures of psychological well-being. Although former caregivers experienced decreases in stress and negative affect, their scores on depression, loneliness, and positive affect did not rebound to levels comparable to noncaregivers and, in fact, remained similar to those of current caregivers up to 3 years after caregiving had ceased. The most consistent predictors of postcaregiving outcomes were social support and intrusive–avoidant thinking about caregiving. The data suggest that some consequences of long-term caregiving may be long-term as well. The needs of former spousal caregivers warrant greater attention both in research and in practice. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Smoking, nicotine dependence, and depressive symptoms in the CARDIA Study. Effects of educational status

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.     

Ovarian Cancer Patients' Psychological Distress: The Role of Physical Impairment, Perceived Unsupportive Family and Friend Behaviors, Perceived Control, and Self-Esteem.

Although research has indicated that illness-related and interpersonal stress are associated with greater psychological distress among cancer patients, little empirical attention has been given to mechanisms that account for these relationships. In the present study, 2 mechanisms for the association between illness-related stress (physical impairment) and interpersonal stress (family and friend unsupportive responses) and psychological distress of 143 ovarian cancer patients were examined cross-sectionally. Separate structural equation models tested whether physical impairment impacted patients' distress via decrements in perceived control over their illness and whether unsupportive behaviors impacted patients' distress via decrements in patients' self-esteem. Results supported the proposed models and suggest that perceived control and self-esteem are 2 mechanisms for explaining how illness-related and interpersonal stress may be associated with psychological distress among women with ovarian cancer. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

The balance of give and take in caregiver–partner relationships: An examination of self-perceived burden, relationship equity, and quality of life from the perspective of care recipients following stroke.

Purpose: We examined the sense of being a burden to others or self-perceived burden (SPB) in people with stroke. Method: A mail survey was completed by 57 former inpatients and their partner caregivers. The care recipient survey included measures of functional status, quality of life, marital satisfaction, equity in the relationship, and psychological distress, as well as SPB using the Self-Perceived Burden Scale (SPBS; Cousineau, McDowell, Hotz, & Hébert, 2003). The caregiver survey included similar measures in addition to a caregiver burden measure. Results: SPB was found to be a prevalent and distressing concern. SPBS scores correlated with measures of functional status and mood; however, the correlations were highest for measures of family roles and work/productivity. Using equity theory as a basis to examine the SPB construct, care recipients who perceived themselves as overbenefiting from the relationship had significantly higher SPB scores than those whose relationship was viewed as equitable or underbenefiting. Conclusions: For some receiving care from a partner after stroke is associated SPB. This sense of burden is related to changes in help-seeking behavior, quality of life, and distress. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Impact of duration of caregiving on stress among primary caregivers of elderly

This study examined (1) the direct effect of the duration of caregiving on caregiver psychological distress, and (2) two- or three-way interactions between duration, stressors (elderly's physical and cognitive impairments), and personal (caregiver's economic or work status) or social (informal or formal supports) resources. We interviewed 833 primary family caregivers of non-institutionalized frail elderly who had been selected through a screening process of all residents aged 65 and over (21,567 persons) in a suburban area of Tokyo. Caregiver psychological distress was evaluated by "Caregiving Burden Scale" as a caregiving-specific psychological measurement, and "Center for Epidemiologic Studies Depression Scale (CES-D)" as a general psychological measurement. The results were as follows. 1. For Caregiving Burden, duration showed a direct effect, as those who had been providing care for a longer duration of time reported higher burden. We found no interactions between duration, stressors, and resources on caregiving burden. 2. For CES-D, duration had interactions, but no direct effect. (1) Two-way interactions were observed between duration and caregiver's economic or work status, as caregivers with a low economic status or who were unemployed showed a stronger negative impact from duration of caregiving. (2) Three-way interactions were observed between duration, the elderly's ADL impairment, and informal support. Informal support, such as a secondary caregiver, buffered the negative impact of the elderly's ADL impairment in cases with a shorter duration of caregiving, but not for those with longer duration. (3) Three-way interactions were observed between duration, the elderly's cognitive impairment, and formal emotional support. Formal emotional support buffered the negative impact of the elderly's cognitive impairment for those with a longer duration of caregiving, but not for those with a shorter duration. These findings suggest that stress-buffering resources differ according to duration of caregiving.     

The role of neuroticism and mastery in spouse caregivers' assessment of and response to a contextual stressor

Data from more than 300 spousal caregivers and their care recipients were analyzed to demonstrate the effects of caregivers' personality attributes--neuroticism and mastery--on their assessment of a contextual stressor (the care recipient'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' personality attributes, such as neuroticism and mastery. Our findings that caregivers' 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.     

Caregiving outcomes for older mothers of adults with mental retardation: A test of the two-factor model of psychological well-being.

A two-factor model of caregiving appraisal and psychological well-being, based on previous findings with caregiving spouses (M. P. Lawton et al; see record 1991-34214-001) was tested with 225 older mothers who provided care at home to an offspring with mental retardation The effects of objective caregiving stressors, caregiver resources, and subjective appraisals (caregiving satisfaction and burden) on the positive and negative dimensions of psychological well-being were examined. LISREL 8 analyses revealed that the model differed in two key ways for caregiving mothers: (a) Positive psychological well-being appeared to diminish subjective burden, and (b) both objective stressors and resources were unrelated to subjective burden. These findings suggest the need for future research into how caregiving dynamics are influenced by the specific nature of the relationship between the caregiver and the recipient. (PsycINFO Database Record (c) 2010 APA, all rights reserved)