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)     

Personality counts for a lot: predictors of mental and physical health of spouse caregivers in two disease groups

The purpose of this study were to examine the influence of personality on mental and physical health of spouse caregivers and to determine whether there were differences in such influences depending on disease context. The disease contexts compared were Alzheimer's disease (AD) and Parkinson's disease (PD; with no coexisting dementia)--both chronic, degenerative diseases of later life. It was predicted that personality would be related to mental and physical health, directly and indirectly, and that AD caregivers would have higher levels of perceived stress and worse mental and physical health outcomes. Participants in the study were 175 caregivers (88 AD; 87 PD) living at home with their ill spouses. The data provided an excellent fit to the hypothesized model of the relationships between personality, disease group, social support, perceived stress, and mental and physical health. Seventy-eight percent of the variance in mental health was accounted for and 35% of the variance in physical health was explained. Personality had significant direct and indirect effects on mental health and significant indirect effects on physical health. As predicted, AD caregivers had significantly worse mental health than PD caregivers; however, AD caregivers had better physical health than PD caregivers, controlling for other variables in the model. These results are discussed in relation to the existing caregiving and behavioral medicine literature. Future research should include different domains of personality--states and longer term self-regulatory processes in addition to traits--to advance models of caregiving processes further.     

Mental and physical health of spouse caregivers: The role of personality.

Although personal resources of caregivers, such as coping skills and social support, have been shown to be important in understanding caregiver stress and health outcomes, personality traits have not previously been considered. The purpose of this study was to examine the association between the personality traits of neuroticism and dispositional optimism and mental and physical health outcomes. It was predicted that personality would have direct effects, and indirect effects through perceived stress, on health outcomes. Participants were spouse caregivers of patients diagnosed with Alzheimer's disease (AD). Results show that neuroticism and optimism were significantly related to mental and physical health. Furthermore, neuroticism had significant direct effects on all of the health outcomes, and substantial indirect effects, through perceived stress, on mental health outcomes. Optimism showed stronger indirect than direct effects on all health outcomes. These findings demonstrate the importance of including personality of the caregiver in theoretical and empirical models of the caregiving process. (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)     

Role of family adaptability in the psychological adjustment of spouse caregivers to patients with dementia.

This study examined the role of family adaptability in moderating the impact of caregiving on psychological adjustment and the relationship between adaptability and marital roles for 54 spouse caregivers to patients with dementia. Greater memory and behavior problems were related to greater burden and depression. For caregivers who were lower in adaptability, longer hours of care were related to greater depression. For caregivers higher in adaptability, hours of care were unrelated to depression. Cluster analysis identified a subset of caregivers lower in adaptability, with a partner who was severely demented, who endorsed a spouse role. These caregivers were the most depressed in the sample. Implications for service providers and suggestions for future research are discussed. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Changes in social support as mediators of the impact of a psychosocial intervention for spouse caregivers of persons with Alzheimer's disease.

The spouse caregivers of 406 patients with Alzheimer's disease were randomly assigned to an enhanced counseling and support intervention or to a usual care control condition. Structured interviews were conducted to assess changes in social support and psychosocial outcomes for the 312 caregivers who provided care in the home for at least 1 year. The number of support persons, satisfaction with the support network, and support persons' assistance with caregiving all increased significantly as a function of the intervention. Structural equation models indicated increased satisfaction with the social support network mediated a significant proportion of the intervention's impact on caregiver depression. A portion of this mediated effect was further mediated by changes in caregiver stress appraisals. Implications for strengthening intervention programs for spouse caregivers of individuals with Alzheimer's disease are discussed. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

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.     

Family caregivers: Gender differences in adjustment to stroke survivors' mental changes.

Objectives: This prospective longitudinal study investigated gender differences in caregiving spouses' adjustment to the challenges of a poststroke life situation based on the caregiving stress model of Yee and Schulz (2000), which we modified. Method: The sample consisted of 97 stroke-survivor and spouse dyads who were questioned 3 months after stroke and again 1 year later. The Beck Anxiety Inventory (Beck & Steer, 1997), the Beck Depression Inventory (Beck, Steer, & Garbin, 1988), and the Giessen Complaints List (Br?hler & Scheer, 1995) were used to capture mental health and physical complaints in stroke survivors' spouses. Covariance analytical methods (analysis of covariance; ANCOVA) were conducted on data from both measuring times to test gender-related interaction effects. Results: Generally, women caregivers reported more anxiety and depressive symptoms than did their men counterparts. However, 15 months after stroke onset, in cases where individuals with stroke had substantial cognitive and mental impairments, the opposite appeared to be true. The results supported the modified caregiving stress model. Women spousal caregivers seem to adjust better to cognitive and emotional changes in their partners than did caregiving husbands. Conclusions: The rehabilitation of stroke survivors may be more successful if gender differences in caregivers' adaptation to their partners' mental changes are taken into consideration in intervention programs for families of stroke survivors. Men spousal caregivers may need counseling aimed at supporting their adjustment to stroke-related cognitive and emotional changes in their wives. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Interpersonal effects of suffering in older adult caregiving relationships.

Examining the interpersonal effects of suffering in the context of family caregiving is an important step to a broader understanding of how exposure to suffering affects humans. In this review article, the authors first describe existing evidence that being exposed to the suffering of a care recipient (conceptualized as psychological distress, physical symptoms, and existential/spiritual distress) directly influences caregivers’ emotional experiences. Drawing from past theory and research, the authors propose that caregivers experience similar, complementary, and/or defensive emotions in response to care recipient suffering through mechanisms such as cognitive empathy, mimicry, and conditioned learning, placing caregivers at risk for psychological and physical morbidity. The authors then describe how gender, relationship closeness, caregiving efficacy, and individual differences in emotion regulation moderate these processes. Finally, the authors provide directions for future research to deepen understanding of interpersonal phenomena among older adults, and they discuss implications for clinical interventions to alleviate the suffering of both caregivers and care recipients. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Psychological, social, and health impact of caregiving: A comparison of Black and White dementia family caregivers and noncaregivers.

Psychological, social, and health variables were compared in 175 Black and White family caregivers of patients with dementia and 175 Black and White noncaregivers. Caregivers and noncaregivers did not differ within race on demographic variables. Caregiving was associated with increased depression and decreased life satisfaction only in White families. However, caregiving appears to have similar social consequences for Black and White families, including restriction of social activity and increased visits and support by family from outside of the home. Race, but not caregiving, was associated with physical health variables. Methodological issues in comparing well-being in Black and White caregivers, in particular the importance of including noncaregiving comparison subjects, are discussed. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Negative and positive health effects of caring for a disabled spouse: Longitudinal findings from the Caregiver Health Effects Study.

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. (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)     

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)     

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)     

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)     

Hassles and uplifts of giving care to a family member with dementia.

The role of daily caregiving stressors (hassles) and small caregiving satisfactions (uplifts) in the well-being of 60 family caregivers was investigated. Hassles and uplifts in 4 domains of caregiving were examined, and direct effects of hassles, uplifts on caregivers' social and psychological well-being, as well as the interactive and net effects of hassles and uplifts, were assessed. Hassles associated with care recipients' behavior demonstrated strongest associations with well-being. Women and caregivers to socially responsive yet behaviorally inappropriate care recipients reported more behavior and cognitive hassles. Uplifts associated with assistance in activities of daily living and with care recipients' behavior were related to well-being, with more uplifts related to greater, rather than less, depression. More intensely involved caregivers reported more of these uplifts. Net effects in the hypothesized direction were found, but no interactive effects emerged. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

The impact of employment and serious illness on grandmothers who are raising their grandchildren

Increasing numbers of children are living in families consisting of grandparents and grandchildren. This paper presents findings of a study in which 123 caregiving grandmothers were interviewed. Fifty-eight percent of these grandmothers were "career caregivers," whose homes were always filled with a child or grandchild. Most of them were in good to excellent physical health and their mental health was at least as good as that of a national sample. Regression analyses found that having a life-threatening physical condition, being younger and white explained psychological anxiety; and having a life-threatening physical condition and not being employed explained psychophysiological mental health symptoms. These findings suggest that some grandmothers are at risk for mental health symptoms and raise questions about the implications of caregiving of grandchildren for women.     

Neuroticism and depressive symptoms among spouse caregivers: Do health behaviors mediate this relationship?

This study examined the mediating role of health behaviors in the relationship between neuroticism and depressive symptoms among spouse caregivers. Path analysis was used to test a model of the caregiver stress process among 233 caregivers of people with dementia. Results indicate that neuroticism has a significant direct effect on depressive symptoms and also indirectly influences depressive symptoms through health behaviors and perceived stress. When individual health behaviors were examined in the path model, only physical activity served a significant mediating role. These findings suggest that neuroticism may lead to depressive symptoms among caregivers partly through declines in physical activity. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Alzheimer's disease afflicted spouses who remain at home: can human dialectics explain the findings?

When one spouse has Alzheimer's disease (AD), marital interactions tend to decline. Findings from this study suggest that level of spousal interactions influence longitudinal outcomes for afflicted spouses. Thirty AD spouses and their spouse caregivers were assessed at baseline (time 1) and two years later (time 2). Continued in-home care at time 2 is predicted by high levels of positive spousal interactions, high caregiver commitment, good caregiver health, and shorter time as caregiver (all assessed at time 1). The same variables but in an inverse relationship predict which AD spouses are deceased at time 2. Nursing home placement is predicted by AD spouses' higher educational level, unhappy marital relationships, and low caregiver commitment. Afflicted spouses' cognitive and functional impairment levels, their physical health and depression do not predict outcomes. A theoretical explanation is developed drawing on Riegel's dialectical theory of human development and Bowlby's attachment theory. It is suggested that interactions between spouses are crucial for afflicted spouses' survival.     

A comparison of primary stressors, secondary stressors, and depressive symptoms between elderly caregiving husbands and wives: The caregiver health effects study.

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' 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. (PsycINFO Database Record (c) 2010 APA, all rights reserved)