Alzheimer's Disease: The Impact of the Family on Spouses,Offspring, and Inlaws

This article reports the findings from a study designed to identify qualities of the multigeneration family system that affected the relationship between the demands of Alzheimer's disease on the family and the health and well-being of (a) spouses, (b) offspring, and (c) offspring's spouses or “inlaws.” Members of 97 families of patients with Alzheimer's disease, recruited from four University-affiliated Alzheimer's Centers, completed detailed questionnaires and participated in a 45-minute telephone interview to assess care-strain, personal stress, appraisals of three major domains of family life (World View, Structure/Organization, and Emotion Management), and three health and well-being indices (Anxiety/Depression, Somatic Symptoms, and Well-Being). Multivariate multiple regression equations, run separately for each of the three groups of family respondents and each of the three family domains, indicated: (1) no significant associations between the severity of the elder's disease and family member health and well-being; (2) female family members reported poorer health and well-being than male family members; and (3) caregiver strain was negatively associated with family member health and well-being. Further, appraised family qualities were associated with the health and well-being of the three groups of respondents differently: directly for offspring, interactively with severity of patient disorder for inlaws, and not at all for spouses. The data suggested that some family qualities served a protective function, whereas others exacerbated the negative effects of caregiving by affecting personal health and well-being. The findings are interpreted in terms of the different roles and expectations for caregiving placed on spouses, offspring, and inlaws. It is suggested that programs of intervention for patients with Alzheimer's and other chronic diseases should focus on the multigeneration family as the context for care, rather than only on the primary caregiver.     

Caregiver Attributions for Late‐Life Depression and Their Associations with Caregiver Burden

Late‐life depression (LLD) has detrimental effects on family caregivers that may be compounded when caregivers believe that depressive behaviors are volitional or within the patient's capacity to control. In this study we examined three person‐centered caregiver attributions that place responsibility for LLD on the patient (i.e., character, controllability, and intention), and the impact of such attributions on levels of general caregiver burden and burden specific to patient depressive symptoms. Participants were 212 spouses and adult children of older adults enrolled in a depression treatment study. Over one third of caregivers endorsed character attributions, which significantly predicted greater levels of both general and depression‐specific burden. Intention attributions were significantly associated with general burden, but not depression‐specific burden. Contrary to our expectation, controllability attributions did not predict either type of burden. Our findings suggest that the assessment of family caregiver attributions for LLD may be useful in identifying caregivers at risk for burden and subsequent health effects, as well as those who may need education and support to provide effective care to a vulnerable population of older adults.     

Factor Structure of Patient and Caregiver Ratings on the Dementia Quality of Life Instrument

ABSTRACT

Preliminary evidence suggests that quality of life reports from patients diagnosed with mild cognitive impairment (MCI) and mild Alzheimer's disease (AD) are as reliable and valid as data provided by caregivers. To date, no studies compared the factor structure of data provided by caregivers and patients. Factor analyses are important to conduct because they are an indicator of validity. This study compared the factor structure of patient and caregiver reports on the Dementia Quality of Life scale (DQoL). Participants (N?=?67) were patients diagnosed with amnestic MCI or mild AD and their caregivers. Principal axis factor analyses were run separately on patient and caregiver report data. The three-factor solutions for patient and caregiver data were nearly identical. Three factors corresponding to positive affect, negative affect, and aesthetics emerged reliably from analyses. Thus, data from patients demonstrated a factor structure that was highly consistent with caregiver report data and conformed to meaningful psychological constructs.     

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.     

Caregiving for Patients in Vegetative and Minimally Conscious States: Perceived Burden as a Mediator in Caregivers’ Expression of Needs and Symptoms of Depression and Anxiety

Involvement of family members is crucial to provide daily informal caring to patients in vegetative state and minimally conscious state. Previous studies showed that perceived burden is a risk factor for informal caregivers as it increases psychophysical distress. This research further investigated the relationship between these factors and aimed at providing a model that thoroughly describes this mechanism of functioning. In the frame of a national survey on people with disorders of consciousness, 487 informal caregivers of children and adult patients in vegetative and minimally conscious state were administered measures of depression, anxiety, caregiver needs, and family strain. Regression models proposed by Baron and Kenny and the Sobel test were adopted to investigate the relationship between depressive and anxiety symptoms, perceived burden and needs expressed. Our study shows that the relation between those symptoms and needs is mediated by burden, where higher burden accentuates and lower burden mitigates the needs expressed by caregivers. Our findings demonstrate that psychosocial components of the burden perceived by caregivers of patients with disorders of consciousness play a key role in shaping those caregivers’ needs, especially their needs for information and communication. We recommend implementation of comprehensive steps to meet the needs of these caregivers, steps that incorporate improved economic and public health programs, social support, and use of psychological interventions to ameliorate caregivers’ psychological distress and decrease their burden.     

Symptoms Among Partners,Family, and Friends of Individuals with Posttraumatic Stress Disorder: Associations with Social Support Behaviors,Gender, and Relationship Status

Social support represents an important recovery factor for individuals with posttraumatic stress disorder (PTSD). Nevertheless, partners, family, and friends who take on the role of caregiver for individuals with PTSD might face multiple difficulties. For example, they are at risk for developing anxiety and depressive symptoms, which could negatively affect their ability to offer support. This study examined the associations between the difficulties of individuals with PTSD (i.e., symptoms and level of functioning), their caregivers’ (partners, family, and friends) anxiety and depressive symptoms, and social support behaviors according to 2 variables: relationship status and gender. Sixty-five individuals with PTSD and either their partner, family member, or friend filled out questionnaires and participated in a trauma-oriented discussion. Social support behaviors were coded. Results revealed no associations between the difficulties of individuals with PTSD and their caregivers’ symptoms. However, caregivers’ depressive symptoms were negatively associated with the quality of some of their social support behaviors. Moreover, relationship status and gender were significant moderators, indicating stronger negative associations between anxiety and depressive symptoms and some social support behaviors of men and caregiving partners. Male caregivers could have difficulties offering appropriate support and responding to traditional masculine roles (e.g., being strong and self-reliant) when they report symptoms themselves. Partners are particularly involved in the everyday life of individuals with PTSD. Thus, they could have difficulties keeping an optimal emotional distance to offer support when they report symptoms themselves. Future directions as well as clinical implications are discussed.     

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.     

Factors Impacting the Mental Health of the Caregivers of Children with Asthma in China: Effects of Family Socioeconomic Status,Symptoms Control,Proneness to Shame,and Family Functioning

Caregiver mental health is widely considered to be an important factor influencing children's asthma symptoms. The present study aimed to examine key factors that contribute to caregiver mental health in pediatric asthma with a Chinese sample. Two hundred participants reported their family socioeconomic status (SES), proneness to shame, asthma symptoms control of their child, family functioning, and their depression and anxiety symptoms. Results suggested that low family SES, low family functioning, and a high level of shame proneness were associated with high levels of anxiety and depression for caregivers. Family functioning mediated the effects of SES and shame on caregiver mental health and also moderated the effects of SES and shame on caregiver depression. This study highlights the importance of reducing experience of shame and enhancing family functioning in families affected by pediatric asthma.     

Self-Reported Abuse and Mistreatment among Japanese Elders Receiving Respite Care

This study examines physical and psychological mistreatment reported by Japanese elders who received care from family members. Data is based on structured face-to-face interviews with community-dwelling elders who utilized respite care services. Among the 118 elderly respondents, 12% reported being hit or almost being hit by their caregivers. Close to 54% reported at least one type of psychological mistreatment. Men who received care from their spouses were most likely to report abuse. Elders who were victimized reported increased levels of depressive symptoms. Logistic regression analyses indicated associations between physical abuse and past conflicts with the caregiver. Psychological mistreatment was associated with receiving care from a spouse, past conflicts with the primary caregiver, and depression. The findings suggest the need for increased awareness of the needs of community-dwelling Japanese elders who are at risk for abuse, mistreatment, and depression.     

Pyramidal training for families of children with problem behavior

The pyramidal training model was extended to multiple family members of children with behavior disorders. Three primary caregivers were taught to implement individualized treatments for problem behavior. They were then taught how to use various instructional strategies (e.g., prompting, feedback) to teach 2 other family members to implement the treatment. Results showed that pyramidal training was effective in increasing caregiver implementation of treatments across three families.     

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.     

Alzheimer's Disease: The Death of the Disease

Alzheimer's disease, a form of dementia, affects middle-age and older adults. The disease is becoming more evident because of growing numbers of older people and better diagnosis and detection methods. The author describes the behavioral and physical symptoms of the disease as well as specific suggestions for care of patients with Alzheimer's disease. Counselors can use this article to provide family members and other persons dealing with Alzheimer's disease with information and practical advice about dealing with the changes occurring in the patient.     

Caregiver depressive symptoms and observed family interaction in low-income children with persistent asthma

This study examined the relationship between caregiver depressive symptoms and observed parenting behaviors and family processes during interactions among 101 urban, low-income Africtan American families with children with persistent asthma. Caregivers (primarily female) were assessed on four dimensions (i.e., warmth/ involvement, hostility, consistent discipline, relationship quality) in three videotaped interaction tasks (loss, conflict, cohesion). The results indicated that increased depressive symptoms were significantly associated with lower warmth/involvement and synchrony scores and greater hostility scores during the loss and conflict tasks. In the total sample, the highest levels of hostility and the lowest levels of warmth/involvement were found for the conflict task; nevertheless, caregivers with moderate/severe depressive symptoms showed a significantly greater increase in hostility from the loss to the conflict task than caregivers with minimal/mild depressive symptoms. The findings highlight the salience of considering task content in family observational process research to expand our understanding of depressed and nondepressed caregivers abilities to modulate appropriately their behaviors and affect across various family interactions. Implications for improving asthma management for low-income children with persistent asthma are discussed, including the utility of multidisciplinary interventions that combine asthma education with family therapy.     

Caregiver burden and family functioning in different neurological diseases

Aim of this study is to examine caregiver burden and family functioning in different neurological conditions. Forty-two primary caregivers of patients with Amyotrophic Lateral Sclerosis (ALS), Alzheimer’s Disease and other dementia (AD), Parkinson’s Disease (PD), Acquired Brain Injuries (ABI) and Multiple Sclerosis (MS) were administered scales for the evaluation of caregiver burden (CBI) and family functioning (FACES IV). Caregiver burden was overall high, with caregivers of patients with ALS and ABI having exceeded the CBI cut-off score for possible burn-out. The average scores of caregivers of patients with AD or other dementia and PD were close to the cut-off score, whereas those of caregivers of patients with MS were significantly lower than the others. Family cohesion, family satisfaction and the quality of family communication were associated with reduced levels of caregiver burden, whereas disengagement was associated with a higher burden. The data from the present study confirm that caregiver burden is a relevant issue in the context of neurological diseases, especially for those causing higher degrees of impairment. Significant correlations with family functioning emerged as well, highlighting the importance of studying and treating caregiver burden within the context of family relations.     

“It can save you if you just forget”: Closeness and Competence as Conditions for Coping among Ugandan Orphans

This article explores the coping strategies of orphaned children and their caregivers supported by a community-based organization in a Ugandan slum area. In-depth qualitative interviews were conducted with eight orphans (aged 12 to 16 years) and their caregivers selected by the community-based organization. The children had experienced several co-occurring risk factors such as loss and separation, poverty, disease, and an unsafe environment. Most caregivers were extended family members. One caregiver was an unrelated foster carer. Three of the households were child-headed. Data were analysed using an adapted approach of Giorgio's (Hafting, 1995; Malterud, 2001) psychological-phenomenological method. Participating children from child-headed households lacked protective factors associated with closeness (i.e., supportive dyadic relationships). All the children in the study experienced competence in the arenas of school and household chores. Cultural advice on handling adversity, including ‘forgetting’, ‘accepting’ and ‘adjusting’, appears to contradict Western theories of coping. Sommerschild's theoretical model on the conditions for coping was effective in identifying conditions in children's lives that may impair their coping, self-worth, and resilience.     

Family Caregivers of Persons With Spinal Cord Injury: Predicting Caregivers at Risk for Probable Depression

OBJECTIVE: To determine the percentage of family caregivers of persons with spinal cord injury (SCI) with probable depression and to test the hypothesis that dysfunctional problem-solving abilities would be significantly predictive of risk status after taking into account important demographic characteristics and caregiver health. DESIGN: Correlational and logistic regression analyses of data collected in a cross-sectional design. PARTICIPANTS: Eighteen men and 103 women caregivers (mean age of caregivers = 45.66 years, SD = 12.88) of individuals with SCI. MAIN OUTCOME MEASURE: The Inventory to Diagnose Depression. RESULTS: Nineteen caregivers (15.7%) met criteria on the Inventory to Diagnose Depression for a major depressive disorder. A dysfunctional problem-solving style was significantly predictive of caregiver depression, regardless of the severity of physical impairment of the care recipient or the physical health of the caregiver and caregiver demographic variables. CONCLUSIONS: The percentage of caregivers with probable depressive disorder may parallel that observed among persons with SCI, using a more conservative self-report measure designed to assess symptoms associated with a depressive syndrome. Family caregivers with a dysfunctional problem-solving style and assisting individuals with more severe injuries may have probable depression.     

Relationship between Mental Health and Burden among Primary Caregivers of Outpatients with Schizophrenia

There is growing recognition that caring for a patient with schizophrenia often results in high levels of perceived burden and poorer overall mental health for caregivers. A quantitative cross‐sectional design and standardized instruments were used to collect data from 355 primary caregivers of adults in outpatient care with schizophrenia in China. Structural equation modeling was used to examine the association between caregiver burden and mental health among primary caregivers and whether this association is influenced by personality, coping style, and family functioning, based on a diathesis–stress perspective. Goodness‐of‐fit indices (χ²/df = 1.406, GFI = 0.919, CFI = 0.957, etc.) confirmed that the modified model fit the data well. In line with the diathesis–stress model, and with this study's hypotheses, we found that caregiver burden was significantly related to mental health outcomes directly. The final model showed that personality traits, coping style, and family function influenced the relationship between caregiver burden and mental health. The neuroticism personality traits have a direct effect on caregiver burden and family functioning in this sample. Coping style had a direct effect on the caregiver burden, and family functioning had a direct effect on the caregiver burden. Our final model about primary caregivers can be applied clinically to predict mental health outcomes from caregiver burden.     

The Role of Stress Exposure and Family Functioning in Internalizing Outcomes of Urban Families

Although research suggests that stress exposure and family functioning are associated with internalizing problems in adolescents and caregivers, surprisingly few studies have investigated the mechanisms that underlie this association. To determine whether family functioning buffers the development of internalizing problems in stress-exposed families, we assessed the relation between stress exposure, family functioning, and internalizing symptoms among a large sample of inner-city male youth and their caregivers living in poverty across five waves of data collection. We hypothesized that stress exposure and family functioning would predict development of subsequent youth and caregiver internalizing problems and that family functioning would moderate this relation, with higher functioning families demonstrating greater resiliency to stress exposure. We used a longitudinal, prospective design to evaluate whether family functioning (assessed at waves one through four) activated or buffered the effects of stress exposure (assessed at wave one) on subsequent internalizing symptoms (assessed at waves four and five). Stress from Developmental Transitions and family functioning were significant predictors of depressive symptoms and anxiety in youth; however, family functioning did not moderate the relation. Family functioning mediated the relation between stress from Daily Hassles and internalizing outcomes suggesting that poor parenting practices, low structure, and low emotional cohesion activate depression and anxiety in youth exposed to chronic and frequent everyday stressors. Surprisingly, only family functioning predicted depressive symptoms in caregivers. Results validate the use of a comprehensive, multi-informant assessment of stress when investigating internalizing outcomes in youth and support using family-based interventions in the treatment and prevention of internalizing.     

Primary caregiver emotional expressiveness relates to toddler emotion understanding

The present study examined the impact of emotional expressiveness in toddlers’ environments on their emotion understanding. Primary caregivers of 35 toddlers completed two surveys regarding the family’s emotional expressiveness and the primary caregiver’s expressivity. Toddlers participated in the Affective Knowledge Test to measure emotion understanding. Toddler emotion understanding related to primary caregiver expressivity, but not family expressiveness. Further, toddler emotion understanding related to primary caregiver Impulse Strength, but not Negative or Positive Emotionality. This suggests that primary caregivers with more impulsive emotional response tendencies may help their children to identify associations between emotional events and reactions.     

Stigma,Expressed Emotion,and Quality of Life in Caregivers of Individuals with Dementia

Expressed emotion (EE) is a measure of a caregiver's critical and emotionally overinvolved (EOI; e.g., intrusive, self‐sacrificing) attitudes and behaviors toward a person with a mental illness. Mounting evidence indicates that high levels of these critical and EOI attitudes and behaviors (collectively termed high EE) in family members are associated with a poorer course of illness for people with a range of disorders, including dementia (Nomura et al., 2005). However, less is known about factors that might trigger high EE and how high EE might impact dementia caregivers’ own mental health. In this study we propose that caregivers who perceive stigma from their relative's illness may be more likely to be critical or intrusive (high EOI) toward their relative in an attempt to control symptomatic behaviors. We further hypothesized that high EE would partially mediate the link between stigma and quality of life (QoL) as there is some evidence that high EE is associated with poorer mental health in caregivers themselves (Safavi et al., 2015). In line with study hypotheses and using a sample of 106 dementia caregivers, we found that greater caregiver stigma was associated with both high EE (for criticism and EOI) and with poorer QoL. Mediational analyses further confirmed that high EE accounts for much of the association between stigma and poorer QoL. Study results suggest that addressing caregiver stigma in therapy could reduce levels of high EE and indirectly therefore improve caregiver QoL. Intervening directly to reduce high EE could also improve caregiver QoL.