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)     

Recurrent syndromal depression in caregivers

The authors investigated recurrent syndromal depression in 103 caregivers using a structured clinical interview. Participants who cared for a family member with a progressive dementia were assessed annually for 3 years and divided into 3 groups: never depressed (47%), episodically depressed (33%), and chronically depressed (20%). Compared with the other 2 groups, the chronically depressed caregivers reported greater levels of stress, upsetting social support, depressive symptomatology, along with higher frequencies of negative life events and more negative reactions to disruptive patient behavior. Precaregiving depression predicted depression during caregiving but did not sufficiently explain recurrent depression in caregivers. Lower levels of positive social support and higher number of life events were related to chronically elevated depressive symptoms and stress.     

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)     

Caregiver depression after bereavement: Chronic stress isn't over when it's over.

Although the adverse mental health consequences of caregiving for a relative with a progressive dementia are well documented, little is known about caregivers' adaptation after bereavement. This longitudinal study examined changes in 3 groups: continuing caregivers, who had been caregiving across a 4-yr period (n?=?98), bereaved caregivers, whose impaired relative died between Years 1 and 4 (n?=?49), and controls (n?=?107). Although a mean of 19.8 mo had elapsed since bereavement by Year 4, bereaved and continuing caregivers did not differ on syndromal depression or depressive symptoms; both groups were significantly more depressed than controls. Time since bereavement was unrelated to depression or social support. Those caregivers who ruminated more about caregiving after bereavement reported more depression, greater stress, and greater social isolation. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Maternal cocaine use and the caregiving environment during early childhood.

The purpose of this study was to examine the quality of the caregiving environment for young children of polydrug cocaine-using mothers. Three aspects of the caregiving environment were examined: physical and social settings for development, maternal psychosocial functioning, and child rearing customs and attitudes. It was hypothesized that maternal cocaine use would be associated with more negative caregiving environments. Results indicated that cocaine-using mothers were more likely to have symptoms of posttraumatic stress disorder, experience or witness community violence, and use negative discipline and that their children were more likely to remain in foster care for longer periods of time, experience more changes in primary caregivers, and be visited by male caregivers less often. The implications of these findings for child adjustment and directions for future research are discussed. (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.     

Appraisal, coping, and social support as mediators of well-being in Black and White family caregivers of patients with Alzheimer's disease.

Family caregivers of patients with Alzheimer's disease (AD) commonly have high levels of psychological distress. Black caregivers often report less depression than White caregivers, but the process underlying this difference is poorly understood. With the use of a stress process model, 123 White and 74 Black family caregivers of patients with AD and other progressive dementias were studied. Black caregivers appraised patient problems as less stressful and reported higher self-efficacy in managing caregiving problems and less depression than did White caregivers. White and Black caregivers also differed significantly in coping responses but not in social supports. Structural equation analyses indicated that the correlational structure of the stress process was similar in White and Black caregivers. Caregiving stressors and race did not affect well-being through direct paths, but they were mediated by effects for appraisal, social support and activity, and coping. Possible cultural mechanisms explaining the better adjustment among Black caregivers are discussed. (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)     

Influence of symptoms, lung function, mood, and social support on level of functioning of patients with COPD

To explain how symptoms, lung function, mood, and social support affect level of functioning, patients (N = 143) with chronic obstructive pulmonary disease (COPD) completed measures assessing their symptoms (Bronchitis-Emphysema Symptom Checklist), mood (Profile of Mood States), social support (Personal Resource Questionnaire), and functioning (Sickness Impact Profile). Those who were receiving oxygen therapy (n = 52) had significantly lower FEV1 scores and experienced significantly poorer functioning than those who were not receiving oxygen therapy (n = 91). Results of path analyses indicated that symptoms and mood directly, and social support indirectly, influenced the functioning of those who were not receiving oxygen. For those who were receiving oxygen, only symptoms directly, and FEV1 indirectly, influenced their functioning. These models need to be confirmed using other samples of patients with COPD.     

Stress, appraisal, coping, and social support as predictors of adaptational outcome among dementia caregivers.

A stress and coping model was used to study predictors of individual differences in caregiver adaptation. A total of 54 family caregivers of elderly dementia patients completed interviews and questionnaires assessing the severity of patient impairment and caregiving stressors; caregiver appraisals, coping responses, and social support and activity; and caregiver outcomes, including depression, life satisfaction, and self-rated health. Correlational and regression analyses supported the utility of the stress and coping model. Appraisal, coping responses, and social support and activity were significant predictors of caregiver outcome, even when severity of caregiving stressors was statistically controlled. The importance of a multidimensional approach to assessing caregiver outcomes was supported by regression analyses indicating that each caregiver outcome was predicted by different patterns of stressors, appraisal, coping, and social support and activity. Results are discussed in terms of a stress and coping model of caregiving, and clinical implications for work with caregiving families. (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)     

Coping with specific stressors in Alzheimer's disease caregiving

Strategies used to cope with specific caregiving stressors were examined in a sample of 170 Alzheimer's disease (AD) caregivers. The most commonly identified stressors were memory deficits, loss of ability to communicate, and gradual decline of a loved one. Wishfulness was related to more depressed affect, regardless of stressor type. Other strategies related to more depressed affect included taking direct action when coping with patient memory deficits and stoicism in response to decline of a loved one. Strategies related to less depressed affect included relaxation in response to memory deficits, acceptance in dealing with communication impairments and decline of a loved one, and seeking social support in coping with decline of a loved one.     

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.     

Living alone does not account for the association between loneliness and sleep in older adults: Response to Hawkley, Preacher, and Cacioppo, 2010.

Ccomments on the original article "Loneliness impairs daytime functioning but not sleep duration," by L. C. Hawkley, K. J. Preacher, and J. T. Cacioppo (see record 2010-04888-004). The association between daytime dysfunction and loneliness in this article was attributed to nonrestorative sleep caused by loneliness. Loneliness can be divided into two forms: social and emotional, where social indicates a measure of social connectedness or isolation, and emotional indicates a perceived presence or lack of emotional support and closeness (Weiss, 1973). It is possible that the emotional loneliness construct is related to poor sleep quality, rather than social loneliness. Based on the results of their own study, the current authors suggest it is unlikely that the association between loneliness and sleep is due solely to the threat of sleeping alone. Rather, it is proposed that emotional loneliness is the key aspect of loneliness that correlates with sleep quality. (PsycINFO Database Record (c) 2011 APA, all rights reserved)     

Associations among caregiving difficulties, burden, and rewards in caregivers to older post-rehabilitation patients

The associations between self-reported rewards and difficulties of caregiving and burden were examined in a sample of 200 informal caregivers to older post-rehabilitation patients. Sixteen percent (16%) of caregivers reported that caregiving was physically difficult only, 15% reported emotional difficulties only, 11% reported social difficulties only, 17% reported multiple difficulties, and 40% had no difficulties. Each type of difficulty (e.g., social, emotional, and physical) was significantly associated with burden in univariate and multiple linear regression analyses, controlling for confounding characteristics. Caregivers reporting multiple types of difficulty experienced higher levels of burden than caregivers who reported only one type of difficulty. Caregivers who received more rewards from caregiving reported fewer difficulties. Caregiving rewards had no independent effect on burden but modified the associations between social and emotional difficulties and burden. In summary, caregiving rewards and difficulties were not mutually exclusive, and their relationship in turn affected burden.     

Desmin and actin filaments in membrane-cytoskeletal preparations of the electric tissue of Electrophorus electricus, L

OBJECTIVES: To assess the effect of undertaking custodial care of a grandchild on grandparents' depression levels and to determine what characteristics are associated with higher depression levels among caregiving grandparents. DESIGN: A longitudinal national probability panel study: the National Survey of Families and Households. The first wave of data (n= 13 008) was collected in 1987 and 1988, and the second wave of data (n=10008) was collected from 1992 through 1994. SETTING: The survey was conducted in respondents' households in the coterminous United States. PARTICIPANTS: The subsample for this study was composed of 3111 respondents who reported being grandparents during the 1992-1994 interviews and for whom complete depression information was available. Of these grandparents, 158 were the primary caregivers for their grandchildren in the 1990s. MAIN OUTCOME MEASURES: Depression was measured using a modified version of the Center for Epidemiological Studies Depression Scale. RESULTS: Those who provide primary care for a grandchild are almost twice as likely to have levels of depressive symptoms above the traditional Center for Epidemiological Studies Depression Scale cut point of 16 (25.1% vs 14.5%). Even when controlling for baseline depression and demographic variables known to affect depressive symptoms, undertaking the care of a grandchild was associated significantly with higher depression levels in a multivariate prospective analysis (P<.01). Among caregiving grandparents, those who recently assumed caregiving responsibilities (P<.05) and women (P<.10) were more depressed and older respondents (P<.10) and those in good health (P<.001) were less depressed. CONCLUSIONS: Undertaking the primary care of a grandchild is associated with an increase in levels of depression. Particularly in light of the recent dramatic increase in the prevalence of grandparent caregiving in the United States, physicians need to explore familial role changes with midlife and older patients who have symptoms of depression. Special attention should be paid to the most at-risk subsets of grandparent caregivers: those who are new caregivers, those in poor health, those who are younger, and women.     

Quality of the caregiver–care recipient relationship: Does it offset negative consequences of caregiving for family caregivers?

This study examined whether relationship quality mediates, moderates, or both mediates and moderates the associations between caregiving stressors (e.g., disability and behavioral problems) and negative consequences associated with caregiver well-being (overload, role captivity, and depression). Data on family (spouses and children) caregivers (n?=?118) came from a longitudinal study of a representative sample of disabled older people and their primary caregivers. Relationship quality mediated the linkages between the presence of problem behaviors and the outcomes of role captivity and depression. That is, when problem behaviors were present, they related to higher levels of captivity and depression because quality of the relationship suffered. Relationship quality moderated the linkage between disability and overload. Specifically, for those with a higher quality of relationship, increased disability was related to higher levels of perceived overload. (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.     

Fibromyalgia: The role of sleep in affect and in negative event reactivity and recovery.

Objective: Fibromyalgia (FM) syndrome is a chronic pain condition characterized by diffuse muscle pain, increased negative mood, and sleep disturbance. Until recently, sleep disturbance in persons with FM has been modeled as the result of the disease process or its associated pain. The current study examined sleep disturbance (i.e., sleep duration and sleep quality) as a predictor of daily affect, stress reactivity, and stress recovery. Design and Measures: A hybrid of daily diary and ecological momentary assessment methodology was used to evaluate the psychosocial functioning of 89 women with FM. Participants recorded numeric ratings of pain, fatigue, and positive and negative affect 3 times throughout the day for 30 consecutive days. At the end of each day, participants completed daily diary records of positive and negative life events. In addition, participants reported on their sleep duration and sleep quality each morning. Results: After accounting for the effects of positive events, negative events, and pain on daily affect scores, it was found that sleep duration and quality were prospectively related to affect and fatigue. Furthermore, the effects of inadequate sleep on negative affect were cumulative. In addition, an inadequate amount of sleep prevented affective recovery from days with a high number of negative events. Conclusions: These results lend support to the hypothesis that sleep is a component of allostatic load and has an upstream role in daily functioning. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

A stress process model of caregiving for individuals with traumatic brain injury.

Objective: To test a stress process model of caregiving for persons with traumatic brain injury. Design: A correlational study using path analysis. Participants: One hundred eight caregivers affiliated with community- or Web-based support groups. Main Outcome Measures: The Modified Caregiver Appraisal Scale, the World Health Organization Quality of Life-Brief Version, the Interpersonal Support Evaluation List, and the COPE. Results: The normed fit index, comparative fit index, and parsimony ratio indicated a good fit for the model, suggesting that coping, social support, and caregiving appraisal contribute to quality of life. A more parsimonious model was respecified and achieved a better fit with fewer paths and variables. Conclusions: Empirical support was found for the proposed caregiving stress process model, which appears to provide useful information for future research and clinical interventions. (PsycINFO Database Record (c) 2010 APA, all rights reserved)