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)     

Predictors of bereavement outcomes in families of patients with cancer: a literature review

The purpose of this paper is to review the literature on predictors of bereavement outcomes in family caregivers of persons who have died of cancer. The literature has been divided into common themes of predictors: characteristics of the deceased person, characteristics of the bereaved person, comparisons of bereaved and non-bereaved persons, well-being of the bereaved person prior to the death, prior interpersonal relationships, characteristics of the illness, characteristics of the caregiving experience, and characteristics of terminal care. A number of recurring patterns point the way to identifying persons who may be at increased risk for poor adjustment during bereavement. It is apparent that men and women express their grief somewhat differently. Whether men or women are at greater risk for poor adjustment, however, remains to be determined. There is some empirical evidence to suggest that lower socioeconomic status and linguistic barriers interfere with adjustment during bereavement. There is a dearth of culturally relevant services to help palliative-care patients and their family members make the required adjustments. The literature makes apparent the need for open awareness of the impending death and for careful and thoughtful planning for where and how the death ought to occur. The regular and frequent presence of professional caregivers contributes to family caregivers' satisfaction with care. Discrepant findings point to the need to explore the issues that underline them. Older bereaved caregivers appear to have some advantages over younger ones, but this finding is not universally found in the results of these studies. Methodological problems include small sample sizes and large variations in the particular bereavement outcomes studied.     

Positive Aspects of Caregiving and Adaptation to Bereavement.

This study examined how positive aspects of caregiving affect adaptation to bereavement among older adults who cared for a family member with dementia. The sample consisted of 217 caregivers who were part of the Resources for Enhancing Alzheimer's Caregiver Health Study. Using pre- and postloss data, hierarchical regressions were carried out to examine the effects of positive aspects of caregiving (caregiving benefit) on postloss depression and grief. Findings show that preloss caregiving benefit was associated with higher levels of postloss depression and grief, even after controlling for caregiver demographic characteristics, contextual factors, and caregiving burden. This effect was particularly strong for the relation between benefit and grief. Results demonstrate the importance of studying both positive and negative aspects of caregiving and their relation to bereavement outcomes. (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.     

Longitudinal patterns of risk for depression in dementia caregivers: Objective and subjective primary stress as predictors.

The present study examined how patterns of risk for depression over 1 year in 188 dementia caregivers (consistently asymptomatic, n ?=?88; consistently symptomatic, n ?=?40; changing risk, n ?=?60) could be predicted by objective (behavior problems of the relative) and subjective (role captivity and overload) primary stress. Results reveal that all primary stressors differentiated caregivers who remained at low levels of symptomatology over the course of 1 year from those who were at risk for experiencing a depressive disorder. In addition, caregivers' subjective experience of role captivity predicted the chronicity of risk. Findings extend prior caregiving research on patterns of depressive symptomatology by highlighting the relationship between subjective primary stressors and stability and change in caregivers' mental health. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Weight changes in caregivers of Alzheimer's care recipients: Psychobehavioral predictors.

Relationships of changes in body mass index (BMI) were examined with changes in psychobehavioral variables in spouse caregivers of individuals with Alzheimer's disease (n?=?81) and matched spouses of controls (n?=?86). Men caregivers had significantly greater BMI and obesity than men controls at both times. Over 15–18 months, women caregivers gained significantly more weight than did women controls. A trend for greater obesity occurred in women caregivers than in women controls at follow-up. Although weight gain was not related to psychobehavioral variables in controls, in men caregivers decreased perceived control and increased fat intake explained significant variance in weight gain. In women caregivers, increased anger control and increased calories explained weight gain. Such caregivers may be at risk for health problems. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Long-term effects of losing a spouse or child in a motor vehicle crash.

Interviews were conducted with 39 individuals who had lost a spouse in a motor vehicle crash 4 to 7 years ago and 39 controls and with 41 parents who had lost a child in a crash and 41 controls. Significant differences between bereaved spouses and controls were revealed on several indicators of general functioning, including depression and other psychiatric symptoms, social functioning, psychological well-being, reactivity to good events, and future worries and concerns. Comparisons between bereaved and control parents also revealed significant differences on some measures of general functioning (especially depression). Responses suggest that the deceased continued to occupy the thoughts and conversations of bereaved spouses and parents. Many respondents continued to ruminate about the accident or what might have been done to prevent it, and they appeared to be unable to accept, resolve, or find any meaning in the loss. Data provide little support for traditional notions of recovery from the sudden, unexpected loss of a spouse or child. (73 ref) (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Postbereavement depressive mood and its prebereavement predictors in HIV+ and HIV– gay men.

Prebereavement predictors of the course of postbereavement depressive mood were examined in 110 gay men who were their partner's caregiver until the partner's death of AIDS. In all, 37 HIV+ and 73 HIV– bereaved caregiving partners were assessed bimonthly throughout a 10-month period beginning 3 months before and ending 7 months after the partner's death. Throughout the 10 months, mean Centers for Epidemiology Scale-Depression (CES-D) scores on depressive mood were above the cutoff for being at risk for major depression. CES-D scores decreased for 63% of bereaved caregivers over the 7 postbereavement months, and 37% showed little change from high CES-D scores or increasing CES-D scores. High prebereavement CES-D scores and finding positive meaning in caregiving predicted diminishing depressive mood; HIV+ serostatus, longer relationships, hassles, and use of distancing and self-blame to cope predicted unrelieved depressive mood. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Modeling caregiver adaptation over time: The longitudinal impact of behavior problems.

Although cross-sectional research has established the link between care demands and various indicators of caregiver adaptation, few studies have examined the impact of care recipients' problematic behavior over time. The present analysis determines the importance of behavior problems when predicting rates of change in subjective stressors (role overload and role captivity) and depression. Using 4-wave longitudinal data (N?=?137) on dementia caregivers, the authors fit individual growth curve models for care demands (i.e., behavior problems, activities of daily living dependencies, and cognitive impairment), subjective stressors, and depression. Subsequent structural equation models found that increases in behavior problems were most likely to predict increases in role overload. The findings emphasize the deleterious long-term impact of behavior problems on individuals' emotional adaptation to caregiving. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Effects of attachment bereavement and pre-event conditions on subsequent depressive symptoms in older adults.

A sample of 1,411 older adults (age 55+) who had been interviewed both prior to and after bereavement was studied, allowing for pre-event controls. Those who had lost a parent, spouse, or child had the strongest depressive reactions, as predicted by an attachment-bonding hypothesis; however, material losses were also related to depression. Although bereavement/loss events were clearly related to subsequent depression even after pre-event depression, resources, and events were controlled, certain pre-event characteristics were predictive of the bereavement/loss events, including prior undesirable events, age, and urban/rural residency. A further analysis of 1,007 persons with two post-event interviews (at 6-month to 1-year follow-up) revealed an initial depressive reaction to a bereavement/loss event, which then dissipated completely within 1 year's time. Generally, bereavement appeared to have limited etiologic importance. (PsycINFO Database Record (c) 2010 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)     

A scale for predicting quality of recovery following the death of a partner

Narrative accounts of bereaved partners of men with AIDS provided data regarding caregiving, bereavement, and the period immediately following bereavement. The findings of the Harvard Bereavement Study were used to develop the Bereavement Response Scale I (BR-I), containing 21 items within 6 categories. Total scores were correlated with scores from 4 mood measures taken at the time of bereavement and again 12 months following bereavement. A significant association was found with the Positive States of Mind Scale. Item analysis suggested that a shorter version containing 6 items, the Bereavement Response Scale II (BR-II), might be a more effective predictive instrument. Further development of the BR-I and BR-II is proposed as a means for using narrative data to predict bereavement outcomes.     

Retrospective assessment of marital adjustment and depression during the first 2 years of spousal bereavement.

Two hundred twelve bereaved elders rated marital adjustment using items drawn from the H. J. Locke and K. M. Wallace (1959) Marital Adjustment Test and completed the Beck Depression Inventory 2 months, 12 months, and 30 months after the loss of their spouses. Their responses were compared with those of 162 nonbereaved individuals of comparable age who were tested at the same times. More positive ratings of marital adjustment were made by bereaved subjects than by nonbereaved subjects. Among nonbereaved elders, more severe ratings of depression were associated with lower ratings of marital adjustment. In the bereaved sample, however, the opposite was found: More severe ratings of depression were associated with higher ratings of marital adjustment. This pattern of results changed only slightly over the 2.5-year course of bereavement and was not influenced by gender. These results are discussed in terms of cognitive processes (e.g., idealization) that influence retrospective assessments of marital adjustment during bereavement. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

The Longitudinal Effects of Early Behavior Problems in the Dementia Caregiving Career.

Using multiregional, 3-year data from early career dementia caregivers, this study determines how behavior problems that occur early in the caregiving career influence time to nursing home placement and change in burden and depression over time. A Cox proportional hazards model indicated that caregivers who managed frequent behavior problems earlier are more likely to institutionalize. After controlling for important time-varying covariates in a series of growth-curve models, caregivers who were faced with severe, early behavior problems reported greater increases in burden and depression over the 3-year study period. The findings suggest the need to consider experiences early in the dementia caregiving career when accounting for key longitudinal outcomes and also emphasize the importance of attrition when attempting to model the health implications of informal long-term care over time. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Does disclosure of emotions facilitate recovery from bereavement? Evidence from two prospective studies.

Two longitudinal studies assessed whether disclosure of emotions facilitates recovery from bereavement. Study 1 tested prospectively over a 2-year period whether the extent to which bereaved persons talked about their loss to others and disclosed their emotions was associated with better adjustment to the loss of a marital partner. There was no evidence that disclosure facilitated adjustment. Study 2 randomly assigned recently bereaved individuals either to the Pennebaker writing task (J. W. Pennebaker & S. K. Beall, 1986) or to no-essay control conditions. The writing task did not result in a reduction of distress or of doctors visits either immediately after the bereavement or at a 6-month follow-up. Beneficial effects were not demonstrated for bereaved persons who had suffered an unexpected loss or who at the time of the study still expressed a high need for emotional disclosure. (PsycINFO Database Record (c) 2010 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.     

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)     

Sleep after spousal bereavement: a study of recovery from stress

AIM: In this study, we compared repeated measures of electroencephalographic (EEG) sleep and subjective sleep quality in nondepressed, spousally bereaved elders and a healthy control group, in order to search for possible psychobiological correlates of bereavement not confounded by concurrent major depression. METHOD: Laboratory-based EEG sleep studies and measures of subjective sleep quality (Pittsburgh Sleep Quality Index [PSQI]) were repeated at 3, 6, 11, 18, and 23 months after spousal bereavement in a study group of 27 elderly volunteers. Data were compared with similar measures from a control group of 27 nonbereaved subjects recorded on three occasions 1 year apart. Repeated-measures analysis of variance (ANOVA), using age as a covariate, examined effects due to time on selected variables in the bereaved group, as well as effects due to group, time, and group-by-time interactions in the experimental and control subjects. RESULTS: Bereaved and control groups showed consistent differences over time in the phasic measures of rapid eye movement (REM) sleep (higher in bereaved subjects during the first and third REM sleep periods), but were similar on all other EEG sleep measures over the 2 years of observation. The bereaved showed a small decline in the percentage of slow-wave sleep over 2 years, but measures of sleep efficiency, REM latency, and delta sleep ratio were stable and did not differ from values seen in control subjects. Bereaved and control subjects were also similar on subjective sleep quality. CONCLUSION: During successful adaptation to the loss of a spouse, and in the absence of major depression, spousal bereavement is associated with elevation in the phasic measures of REM sleep but does not appear to be associated with other physiologic sleep changes typical of major depression when studied at 3 to 23 months after the event. Although this observation does not preclude the possibility of significant sleep disturbance nearer the time of the event, it suggests that preservation of normal sleep following a major negative life event may be an important correlate of the resilience seen in successful aging. The elevation in REM density may provide a psychobiological correlate of bereavement not confounded by concurrent major depression.     

Obese people who seek treatment have different characteristics than those who do not seek treatment.

A group of obese people who had not sought treatment; an obese group who had sought treatment in a professional, hospital-based program; and normal-weight controls (N?=?547) were compared in regard to level of psychopathology, binge eating, and negative emotional eating. Because the groups differed significantly on several demographic variables, 3 demographically matched groups were created and compared (n?=?177, 59 per group). In the matched subgroups, obese people who had sought treatment reported greater psychopathology and more binge eating than did normal-weight controls or those who had not sought treatment. Both obese groups (including those who had not sought treatment) endorsed more symptoms of distress, negative emotional eating, overeating, difficulty resisting temptation, and less exercise than did normal-weight controls. (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)