Caring for the Caregivers: An Investigation of Factors Related to Well-Being Among Parents Caring for a Child with Smith-Magenis Syndrome

Smith-Magenis syndrome (SMS) is a complex disorder characterized by numerous challenges, including intellectual disability, speech delay, decreased pain sensitivity, sleep disturbances, hyperactivity, mood instability, and self-injury. Caregivers must readily adapt to the ever-changing needs of the child. Due to these demands, caregivers may encounter difficulties maintaining their own level of well-being. Thus, a total of 112 primary caregivers (i.e., parents) of individuals diagnosed with SMS responded to online questionnaires to assess demographic and psychosocial factors, such as perceptions of child health vulnerability, benefit finding, sleep behaviors, anxiety and depression symptomatology, and caregiver satisfaction and self-efficacy, which may be related to caregiver well-being. Results show that, among mothers, caregiver well-being was directly related to perceived child health vulnerability, caregiver satisfaction, and benefit finding, and a significant moderating effect was observed for depression/anxiety counseling after beginning the caregiver role on the relationship between anxiety symptomatology and caregiver well-being. Results further suggest that maternal caregivers who report high levels of anxiety but do not seek counseling fair the worst in terms of well-being. Among fathers, lower depression symptoms and greater benefit finding were related to higher levels of caregiver well-being. These data show that many factors play roles in influencing coping and well-being among SMS caregivers. Investigating these variables and relationships may reveal additional resources and interventions to assist primary caregivers.     

Predictors of depression in caregivers of dementia patients: boundary ambiguity and mastery

This study examined the role of two perceptual variables in predicting the development of depressive symptoms in caregivers. The first, boundary ambiguity, refers to whether the dementia patient is perceived as psychologically in or out of the family system. The second, an orientation toward mastery, is related to how persons manage various stressful situations, including caring for a dementia patient. This study included 70 patients and their caregivers. Stepwise regression and path analytic techniques were used to compare the impact of variables related to the illness per se and of variables related to caregivers' perceptions of their situations. Results indicate that both perceptual variables, boundary ambiguity, and mastery, are significantly related to a caregivers' depression level whereas severity of the patient's dementia is not. In sum, the more a caregiver perceives a mate as psychologically absent, the less masterful and the more depressed she or he is.     

Overprotective Relationships: A Nonsupportive Side of Social Networks

Chronically ill adults who feel overprotected by family members tend to be more depressed. However, little is known about the source of these feelings of overly protective care. In this study, three explanations why family members may be seen by stroke patients as overprotective were tested: (a) a discrepancy between patients and caregivers in judging patient functioning; (b) caregiver protective behaviors, such as restricting the patient because of fear for the patient's safety; and (c) caregivers' negative attitudes toward the patient. Consistent with prior work, patients who felt overprotected were more depressed even when the severity of the stroke was controlled for. Caregivers with negative attitudes toward the patient were most likely to be seen as overprotective by the stroke patient. Ways in which negative, resentful attitudes of caregivers are translated into behaviors that engender feelings of overprotection are discussed.     

Burden, depression, and anxiety in caregivers of people with amyotrophic lateral sclerosis

Amyotrophic lateral sclerosis (ALS) is a progressive and fatal neurodegenerative disease caused by the degeneration of motor neurons. The burden for ALS caregivers is quite high. There are still few studies that have investigated the emotional impact of ALS care. We conducted a cross-sectional study among 40 ALS caregivers, assessing general worries, burden of care, depression, anxiety, perception of social support, and patients' severity of disease. Caregiver burden, depression, and anxiety were positively related with each other, and all these variables had a negative relation with social support. Patient's loss of physical functions was positively related with caregiver burden, anxiety, and somatic expression of depression. Caregivers expressed worries for their own health conditions. Given these results, we consider the hypothesis of an emotional-somatic impact of ALS care. The implications and limitations are discussed.     

脑卒中患者功能独立性与家庭照料者负担感的关系：以社会支持为中介变量和调节变量

研究对203名脑卒中患者的家庭照料者进行了问卷调查,以探讨患者的功能独立性对家庭照料者负担感的作用机制。结果显示,82.3%脑卒中患者的家庭照料者有明显的负担感;患者的功能独立性与家庭照料者的负担感显著负相关;来自患者的社会支持在患者功能独立性与家庭照料者负担感之间起中介作用,而来自患者之外的社会支持则起调节作用。结果表明,在家庭照料负担的干预实践中,应注意区分来源不同的社会支持及其作用机制。     

Impact of patient suffering on caregiver well-being: the case of amyotrophic lateral sclerosis patients and their caregivers

The impact of patient suffering on family caregivers is an understudied but important topic. This study of patients with amyotrophic lateral sclerosis (ALS) and their caregivers examined the associations of two components of patient suffering: patient physical symptoms, and mental distress, as well as the patient's support for the caregiver, with caregiver well-being. The sample consisted of 52 patients with ALS and their caregivers. Patients and caregivers each completed a structured survey assessing multiple domains including demographics, health, and well-being. Specifically, patients rated their own physical symptoms and mental distress. Caregivers rated their own daily affect, and the extent to which they perceived the patient as supportive. Caregivers also reported whether or not they had found any benefit in dealing with the patient's illness. Regression analyses yielded significant associations of patient distress with caregiver negative affect; patient support was associated with greater caregiver positive affect, and patient symptoms and support were associated with greater likelihood of caregiver benefit finding. There was a significant two-way interaction of patient symptoms by support, namely, benefit finding was not only more likely with greater physical suffering and patient support, but it was also the case that caregivers who perceived the care recipient as unsupportive could only find benefit when this person experienced intense physical suffering. Support interventions for ALS patients and their caregivers should devote particular attention to how caregivers may be affected by witnessing their loved one's sufferings, as well as identify and address challenges in support exchanges between caregivers and patients.     

Caregiver models of self and others, coping, and depression: predictors of depression in children with chronic pain.

In a sample of 59 chronically ill pediatric patients and their maternal caregivers, both child-reported pain and caregiver-reported depression predicted child-reported depression. Results further suggested that the association between pain and depression in children is ameliorated by caregiver coping strategies and that how caregivers cope is a function of their attachment-related representations of the self and others. Caregivers with a negative model of the self were more depressed. and those with a negative model of others were more prone to use avoidant coping strategies, and, in turn, to be more depressed. However, the extent to which caregivers with negative models of self used more avoidant and less approach coping appeared to depend on whether they perceived that others were likely to respond to their needs.     

Perceptions of Adequate Personal Time and Wellbeing among African American Families with Adolescents

The current study examines the perception of adequate personal or leisure time, and its association with family and caregiver functioning, among a sample of low-income African American families. The investigation is grounded in Conservation of Resources (COR) theory which predicts that caregivers who perceive more adequate personal time will also report higher levels of optimism and lower levels of depressive symptoms, and will have adolescents who report more household routines and less psychologically controlling parenting. A total of 115 caregiver-adolescent (age 14–18) dyads were recruited from a low-income, predominantly African American neighborhood in a major metropolitan center in the United States as part of a larger survey on African American family life. Results indicate that caregivers report perceiving inadequate amounts of time to sleep, get enough exercise, and relax. Caregivers also report comparatively less adequate personal time than time with children. Analyses reveal that caregivers who perceive having more adequate leisure or personal time, report fewer depressive symptoms and higher levels of optimism, after controlling for perceptions of adequate financial resources. Alternatively, there was no association between perceptions of free or leisure time and parenting behaviors, including maintenance of household routines and the use of psychological control. The results underscore the need to examine non-material resources, and their association with wellbeing.     

Caregiver Attitudes About Patients Told They Have Alzheimer's Disease After Truth Disclosure

We wished to determine caregiver attitudes about telling patients they have Alzheimer's disease (AD). At a clinic visit, the patient, caregiver, and other family members were informed of the diagnosis of AD in a frank discussion. Caregivers accompanying patients to the Memory Disorders Clinic (MDC) were interviewed in a postvisit telephone survey 3–12 months after the truth disclosure visit. Of the 37 caregivers of a consecutive series of AD clinic patients we contacted, 35 agreed to the interview. Of those caregivers interviewed, 68.6% agreed that it had been a good idea to tell the patient the diagnosis, although 11.4% disagreed. 74.3% thought that the truth disclosure had not been too upsetting; 20% disagreed. Caregivers with more education were more likely to agree that patients should be informed. Neither the relationship of the caregiver to the patient, the patient's age, sex, education level, nor degree of dementia were predictive of the caregiver's attitude about informing the patient. Most Caregivers agreed with disclosing the diagnosis. Only a small group of patients were judged very upset after hearing the diagnosis. Even for those patients, caregivers generally felt that an honest discussion of the diagnosis had been helpful.     

What Is a Nonresponder? A Qualitative Analysis of Nonresponse to a Behavioral Intervention

This study used qualitative methods to understand reasons for treatment nonresponse following a behavioral intervention for family caregivers of people with dementia. Caregivers and interventionists completed semistructured interviews about their experience of the treatment after completing a course of Resources for Enhancing Alzheimer’s Caregiver Health in VA (REACH VA). Treatment response from the 22 caregivers who completed the 12-session treatment was assessed using pre- to posttreatment change scores on measures of depression and caregiver burden. Interviews from the 14 nonresponder caregiver/interventionist dyads (28 total) were analyzed qualitatively to identify caregiver factors that negatively impacted improvement in depression and caregiver burden, such as emotional processing difficulties, wanting more support than structure, and limited support/difficulty asking for help. Ways nonresponders benefited from REACH VA beyond improvement on self-report symptom measures were also identified and included learning to problem solve more effectively, feeling understood and supported by another, and taking a different perspective on caregiving. The benefits of using qualitative methods to assess the experience of treatment nonresponders and identify individuals who may benefit from additional treatment or a different approach are discussed.     

Endorsement of proactively aggressive caregiving strategies moderates the relation between caregiver mental health and potentially harmful caregiving behavior

This research tested the proposition that the oft-reported relation between caregiver mental health outcomes (i.e., resentment, depression) and potentially harmful caregiver behavior (PHB) would be mediated or moderated by caregiver endorsement of proactively aggressive caregiving strategies (PA). Caregiver resentment was the strongest predictor of PHB in the sample of 417 informal caregivers who resided with their care recipients; in fact, resentment mediated the impact of caregiver depression, thus suggesting that depressed affect was associated with PHB only if depressed caregivers resented their caregiving burdens. As predicted, caregiver endorsement of PA moderated the relation between resentment and PHB, such that links between these two constructs were strongest when caregivers were high in both resentment and PA. Endorsement of PA also mediated the relations between demographic or contextual variables (i.e., income, care recipient dementia) and PHB. Implications of these results for research and intervention are discussed.     

Reduction of caregiver burden in Alzheimer's disease by treatment with galantamine

Alzheimer's disease is a progressive condition characterized by a loss of cognition, altered behavior, and a loss of functional ability, such as bathing, dressing, toileting, and organizing finances. Family and friends provide nearly three quarters of all care for patients with Alzheimer's disease. This informal care results in significant burden to caregivers. Caregiver burden is the set of physical, psychological or emotional, social, and financial problems that family members may experience when caring for impaired older adults. Caregivers of Alzheimer's disease patients report higher rates of physical symptoms, mortality, depression, and fatigue, as well as adverse effects on employment compared with those who are not caregivers for Alzheimer's disease patients. In many cases, the same family members are responsible for both out-of-pocket expenditures and caregiving duties. For this article, a MEDLINE search using the key words "caregiver and Alzheimer's disease" and "cost and Alzheimer's disease" was performed. The purpose of this article is to review the literature on caregiver burden, the components of caregiver burden, effects of caregiving on the health of caregivers, the cost of Alzheimer's disease on the caregiver and society, and the benefits attainable with treatment.     

Caring for a Family Member With Cancer: Past Communal Behavior and Affective Reactions1

An important recent development in the caregiving literature is an increased focus on the role played by the interpersonal relationship between caregiver and care recipient. In this study, a prediction derived from communal relationship theory (Clark & Mills, 1979, 1993; Mills & Clark, 1982) was tested in a sample of patients with recurrent cancer and their family caregivers. Specifically, it was hypothesized that if a relationship had been communal in the past (i.e., characterized by mutual demonstrations of concern for and responsiveness to one another's needs), positive feelings about helping one's partner should continue even when one partner's needs far outweigh those of the other. Consistent with this hypothesis, results indicated that caregivers whose relationship with the patient before illness onset had been characterized by relatively infrequent communal behaviors evidenced more symptoms of depression that did those whose relationship had been characterized by more frequent communal behaviors. In addition, the effects of prior communal behavior on depressed affect were both mediated and moderated by feelings of burden. Caregivers who recalled relatively few communal behaviors in their past relationship felt more burdened by their caregiving role, and burden in turn predicted greater depressive symptomatology. Implications for early identification of caregivers at risk for becoming distressed are discussed.     

Predictors of Appraisal and Psychological Well-Being in Alzheimer's Disease Family Caregivers

The objective of this study was to test a model of stress, appraisal, and adaptation in 114 family caregivers of patients diagnosed with dementia of the Alzheimer's type (white non-Hispanic, N = 64; Hispanic-American, N = 50). Results of structural equation analysis show that appraised caregiver burden played a central role in determining the psychological well-being of family caregivers. The findings indicate that this mediating variable, negative caregiver appraisal, was predicted by increased functional limitations and behavioral disturbances in the patient, poorer perceived physical health, and lower levels of perceived emotional support. Contrary to a priori hypotheses, functional limitations in the patient also exhibited a direct association with caregiver depression. Further, patient cognitive impairment and caregiver ethnicity were not related to caregiver appraisal. Overall, these results support the role of appraised burden in mediating the relationships between caregiving factors and the adaptational outcome of depression. The implications of these findings, limitations of the study, and future directions are discussed.     

Assessment of depression in patients with Alzheimer's disease: concordance among informants.

This study is an investigation of the concordance among different sources of information on ratings of depression in patients with Alzheimer's disease (AD). Informants were 75 outpatients with diagnosed AD (22 with major depressive disorder), their caregivers, and geriatric clinicians. Clinicians rated each patient on the Hamilton Rating Scale for Depression on the basis of (a) the patient's report, (b) the caregiver's report, and (c) the clinician's evaluation. Overall, patients perceived themselves as less depressed than did caregivers or clinicians; for nondepressed patients, caregivers reported patients less depressed than clinicians reported; for depressed patients, no significant differences were obtained between caregiver or clinician. Certain items were more discrepant among informants and significantly differentiated depressed from nondepressed AD patients. Level of patient dementia did not affect ratings. These findings support the need for comprehensive, accurate assessment of depression in AD patients.     

Adjustment of caregivers to depressed older adults.

In this research, older adults (N = 150) hospitalized for major depression and their wife, husband, daughter, or son caregivers were interviewed. The primary purpose of the research was to evaluate the ability of caregiver background characteristics, patient illness characteristics, caregiver coping, and strategies for managing the patient at home to predict caregiver adjustment. Among the caregiver characteristics, being in functional health, being male, and being a spouse caregiver were associated with better adjustment. Husbands evidenced the best adaptation to caregiving and daughters the poorest. Patient illness characteristics were not related to caregiver adjustment. Coping with caregiving stresses by using tension reduction and deliberate effort behaviors and managing the patient with criticism and guidance were related to poorer caregiver adjustment.     

Caregiver Behaviors and Child Distress in Trauma Narration and Processing Sessions of Trauma-Focused Cognitive Behavioral Therapy (TF-CBT)

Trauma-Focused Cognitive Behavioral Therapy (TF-CBT) is an effective treatment for children impacted by trauma, and non-offending caregivers play an important role in this treatment. This study aims to identify correlates of four caregiver variables that have been identified as predictors of child outcomes in TF-CBT: support, cognitive-emotional processing, avoidance, and blame/criticism. Audio recorded sessions were coded from a community effectiveness trial of TF-CBT that included 71 child-caregiver dyads participating in the trauma narration and processing phase of treatment. Regression analyses were conducted to examine caregiver trauma history and child baseline symptoms (internalizing, externalizing, and posttraumatic stress disorder [PTSD] symptoms) as predictors of caregiver behavior during the trauma processing sessions. Caregivers who reported exposure to more trauma types exhibited more in-session avoidance and also processing during the trauma processing phase of treatment. Child symptoms at baseline did not predict caregiver in-session behaviors. Bivariate correlations were used to investigate concurrent associations between mean levels of in-session caregiver behaviors and in-session child distress (negative emotion, hopelessness, negative behaviors). More caregiver blame/criticism was associated with more in-session child distress on all three measures. Caregiver avoidance was associated with more child negative emotion and hopelessness. Findings may help identify therapeutic targets when working with caregivers to promote change and enhance TF-CBT outcomes.     

Caregiver preference for reinforcement‐based interventions for problem behavior maintained by positive reinforcement

Social validity of behavioral interventions typically is assessed with indirect methods or by determining preferences of the individuals who receive treatment, and direct observation of caregiver preference rarely is described. In this study, preferences of 5 caregivers were determined via a concurrent‐chains procedure. Caregivers were neurotypical, and children had been diagnosed with developmental disabilities and engaged in problem behavior maintained by positive reinforcement. Caregivers were taught to implement noncontingent reinforcement (NCR), differential reinforcement of alternative behavior (DRA), and differential reinforcement of other behavior (DRO), and the caregivers selected interventions to implement during sessions with the child after they had demonstrated proficiency in implementing the interventions. Three caregivers preferred DRA, 1 caregiver preferred differential reinforcement procedures, and 1 caregiver did not exhibit a preference. Direct observation of implementation in concurrent‐chains procedures may allow the identification of interventions that are implemented with sufficient integrity and preferred by caregivers.