The ties that bind: the relationship between caregiver burden and the neuropsychological functioning of TBI survivors

Advances in medical and assistive technology have increased the likelihood of survival following a traumatic brain injury (TBI). Consequently, families frequently must provide care to individuals with TBI. Because they are rarely prepared for the associated demanding medical needs and financial burden, family caregivers are at risk for physical and emotional problems, which can negatively influence their individual and family functioning. Whereas scholars have examined the influence of survivor functioning on caregiver burden, few have explicitly recognized that caregiver burden also influences survivor functioning. Results of a multivariate linear regression suggest that, in a sample of 51 pairs of TBI survivors and their caregivers living in Colombia, survivors receiving care from a family member who reported a higher level of burden had poorer objective neuropsychological functioning than those receiving care from a family member who reported a lower level of burden, after controlling for survivor education and history of occupational therapy. Therefore, a family-focused approach might maximize intervention effectiveness, especially for Latin American and Hispanic families, which tend to be characterized by a strong sense of familism. The emphasis on family can create problems in a healthcare system that views the individual as the primary unit.     

Social support moderates caregiver life satisfaction following traumatic brain injury

Social support is an important determinant of adjustment following traumatic brain injury (TBI) sustained by a family member. The present study examined the extent to which social support moderates the influence of characteristics of the person with injury on caregiver subjective well-being. Sixty pairs of individuals who had sustained a moderate to severe TBI and their caregivers (N=120) participated. Years postinjury ranged from 0.3 to 9.9 ( M=4.8, SD=2.6). Cognitive, functional, and neurobehavioral functioning of participants with TBI were assessed using neuropsychological tests and rating scales. Caregiver life satisfaction and perceived social support were assessed using self-report questionnaires. Results indicated that time since injury was unrelated to life satisfaction. Neurobehavioral disturbances showed an inverse relation with life satisfaction. Social support emerged as an important moderator of life satisfaction. Only among caregivers with low social support was cognitive dysfunction adversely related to life satisfaction. Similarly, a trend suggested that patient unawareness of deficit was associated with caregiver life dissatisfaction only among caregivers with low social support. In contrast, these characteristics were unrelated to life satisfaction among caregivers with adequate social support.     

Social Support Moderates Caregiver Life Satisfaction Following Traumatic Brain Injury

Social support is an important determinant of adjustment following traumatic brain injury (TBI) sustained by a family member. The present study examined the extent to which social support moderates the influence of characteristics of the person with injury on caregiver subjective well-being. Sixty pairs of individuals who had sustained a moderate to severe TBI and their caregivers (N = 120) participated. Years postinjury ranged from 0.3 to 9.9 (M = 4.8, SD = 2.6). Cognitive, functional, and neurobehavioral functioning of participants with TBI were assessed using neuropsychological tests and rating scales. Caregiver life satisfaction and perceived social support were assessed using self-report questionnaires. Results indicated that time since injury was unrelated to life satisfaction. Neurobehavioral disturbances showed an inverse relation with life satisfaction. Social support emerged as an important moderator of life satisfaction. Only among caregivers with low social support was cognitive dysfunction adversely related to life satisfaction. Similarly, a trend suggested that patient unawareness of deficit was associated with caregiver life dissatisfaction only among caregivers with low social support. In contrast, these characteristics were unrelated to life satisfaction among caregivers with adequate social support.     

Premorbid relationship satisfaction and caregiver burden in dementia caregivers

Dementia caregiver appraisal of the quality of their current and premorbid relationship with the care recipient is associated with caregiving behaviors, caregiver mood, and the decision to end home care. This study examined the contribution of premorbid relationship satisfaction to caregiver burden in dementia caregivers. Live-in dementia caregivers (n = 72) completed several psychosocial measures. Caregiver responses were used to divide them into low premorbid relationship satisfaction group (low) versus high premorbid relationship satisfaction group (high). Results indicate that premorbid relationship satisfaction is negatively associated with caregiver burden and quality of family functioning. Caregivers with high satisfaction demonstrated significantly less burden and less reactivity to memory and behavior problems, and better problem solving skills and more effective communication compared with the low caregivers. Findings are independent of length of caregiving, disease severity, care recipient daily functioning, and relationship type. Relationship satisfaction may be an important contributor to caregiver burden.     

Association between incongruence about survivor function and outcomes among stroke survivors and family caregivers

Background: Stroke survivors and family caregivers often have incongruent appraisals of survivor cognitive, physical, and psychosocial function. Partner incongruence contributes to poor outcomes for survivors and caregivers.

Objectives: This study explored whether partner incongruence: (1) differs by function domain; (2) increases or decreases over time, and; (3) is associated with self-rated health, distress, stress, and depressive symptoms.

Methods: Structured surveys were administered to 32 survivors and caregivers at approximately 3 (enrollment) and 7 months (follow-up) post-stroke. Paired t-tests were used to examine partners’ ratings of survivor function at enrollment and follow-up, and changes in incongruence over time. Partial correlations were used to examine the association between incongruence at enrollment and outcomes at follow-up.

Results: Survivors consistently rated their own memory and thinking as significantly better than caregivers rated their memory and thinking. At follow-up, survivors rated their own communication as significantly better than caregivers rated their communication. Incongruence about survivor memory and thinking was associated with survivor distress, as well as caregiver distress, stress, and depressive symptoms. Incongruence about survivor ADLs was associated with caregiver stress and depressive symptoms. Incongruence about survivor social participation was associated with caregiver distress.

Conclusions: Findings from this study suggest that survivors and caregivers often have incongruent appraisals of survivor function, that incongruence does not improve naturally over time, and that incongruence may be detrimental for survivor and caregiver outcomes. Further research should be directed at the mitigation of incongruence and strategies to improve outcomes for both survivors and family caregivers.     

Youth and Caregiver Access to Peer Advocates and Satisfaction with Mental Health Services

Access to peer advocates is increasingly available to youth and their caregivers who are receiving services in the public mental health system. This study examines associations between reported access to a youth or family advocate and perceptions of satisfaction with mental health services. A cross-sectional survey of youth (N = 768) and caregivers (N = 1,231) who utilized public mental health services in New York State in 2012 was conducted. The survey includes items on access to youth or family advocates and degree of satisfaction with mental health services. A greater proportion of youth or caregivers with access to peer advocates compared to those without access responded positively on the satisfaction domains of access to services, appropriateness of services, participation in services and overall/global satisfaction. Access to peer advocates was also positively associated with agreement on the psychotropic medication comprehension domain for youth and on perceptions of child functioning and social connectedness for caregivers compared to those without access. This study adds to the growing understanding of the important role peer advocates play in engaging youth with mental health needs and their caregivers in mental health services.     

Unique contribution of family functioning in caregivers of patients with mild to moderate dementia

The relationship between family functioning and dementia caregiving is complex. The present study examined the interrelationships between family functioning, caregiver burden, and patient characteristics. Participants were 72 live-in, family caregivers of patients with mild (n = 47) or moderate dementia (n = 25). Caregivers completed measures of burden, family functioning, depression, and anxiety. Ratings of patients' memory/behavior problems and patients' activities of daily living were also collected. Results indicated that higher levels of caregiver burden were significantly associated with increased caregiver depression and anxiety, greater frequency of memory and behavior problems in the dementia patient, worse activities of daily living, and poorer family functioning. Even after controlling for caregiver depression, caregiver anxiety, and frequency of memory/behavior problems in dementia patients, poorer family functioning continued to be associated with higher levels of caregiver burden. Caregivers with high levels of burden reported greater family dysfunction in communication and roles, regardless of their relationship to the patient (i.e., spouse or child). These findings suggest that including a family systems component in caregiver interventions may be beneficial in reducing burden in these very distressed individuals.     

Caregiver preference for rivastigmine patch relative to capsules for treatment of probable Alzheimer's disease

BACKGROUND: Family caregivers comprise a critical component in the care of Alzheimer's disease (AD) patients. Among their many tasks, caregivers are responsible for administering and managing medications. Effective interventions incorporate the needs of both the AD patient and the caregiver, and understanding treatment preferences may maximize intervention effectiveness. Transdermal patches may offer advantages over conventional oral formulations. METHODS: A 24-week randomized controlled trial compared the rivastigmine patch to the rivastigmine capsule and placebo in patients with probable AD. At baseline and Weeks 8 and 24, the AD Caregiver Preference Questionnaire (ADCPQ) was used to evaluate caregiver expectations, preferences and satisfaction with treatment. Double-dummy treatment blinding ensured that caregiver preference for the patch or capsule was not confounded by perceptions of efficacy or tolerability. Reasons for preference were also elicited. The analytic sample included caregivers who completed the ADCPQ at Weeks 8 and/or 24. RESULTS: One thousand and fifty-nine caregivers completed the ADCPQ. More than 70% of caregivers preferred the rivastigmine patch to the capsule. The patch was significantly preferred to the capsule with respect to ease of following the schedule and ease of use. Caregivers indicated greater satisfaction overall, greater satisfaction with administration, and less interference with daily life with the patch versus the capsule (all p相似文献   

Predictors of complicated grief among dementia caregivers: a prospective study of bereavement.

OBJECTIVE: Most family caregivers adapt well to the death of their care recipient relative; however, a sizable minority continues to experience postdeath psychiatric morbidity. The purpose of this study was to better understand why some caregivers manifest clinical levels of complicated grief postdeath. This is the first study to prospectively assess predictors of complicated grief among family caregivers of patients with dementia who experience the death of their care recipient. METHOD: The sample of bereaved caregivers is drawn from a larger study of 1,222 family caregivers providing in-home care to their relative with dementia. In-home assessments of caregivers and patients were carried out at baseline and six-month intervals for a total of 18 months. This article is based on the 217 caregivers who experienced the death of their care recipient in the course of the study. Three logistic regression models are tested to identify pre- and postbereavement predictors of complicated grief, including sociodemographic factors, characteristics of the caregiving experience, including participation in a caregiver intervention, other psychiatric morbidities, and medication use. RESULTS: Twenty percent of dementia caregivers evidenced complicated grief along with high levels of depressive symptomatology postdeath. Controlling for sociodemographic factors, caregivers who had high levels of preloss depressive symptoms and burden, reported positive features of the caregiving experience, and were caring for a more cognitively impaired patient were more likely to report clinical levels of complicated grief postloss. In addition, caregivers who were enrolled in a psychosocial caregiver intervention designed to reduce depression and burden reported lower levels of complicated grief. CONCLUSION: This study identifies predictors of complicated grief for which interventions could be developed to not only ease caregiver distress, but also serve as preventive interventions for bereavement. Reducing the burden of active caregiving, treating depression before the death of the loved one and providing supportive psychosocial and skills training caregiver interventions can prevent the emergence of postdeath psychiatric morbidity.     

Family dimensions in anxious-depressed school refusers

The Family Adaptability and Cohesion Evaluation Scale II (FACES II) was administered to 46 adolescents with comorbid anxiety and major depressive disorders and to their parents in a treatment study of school refusal. FACES II measures cohesion and adaptability dimensions, as well as family type (balanced to extreme). Generally, adolescents and parents reported low cohesion (i.e.. disengagement) and low adaptability (i.e.. rigidity) on FACES II. Adolescents and parents described their ideal families as significantly less disengaged and less rigid than their own families. Fifty percent of adolescents, 38% of fathers, and 24% of mothers classified their families as the extreme type. Adolescents in extreme families, when compared with adolescents in more balanced families, reported significantly higher scores on two of three depression instruments and on a measure of somatic symptoms. Family therapy to improve cohesion and adaptability and treatments focused on improving depression and somatic symptoms may improve family functioning and decrease the severity and course of school refusal.     

Predictors of Depressive Symptomatology Among Lower Social Class Caregivers of Persons with Chronic Mental Illness

This study examined the predictors of depressive symptomatology among caregivers of persons with chronic mental illness. Data were collected through in-person interviews with family caregivers of 103 adults with chronic mental illness who were served by mental health case management agencies. The results indicated that insufficiency of overall social support was the most powerful predictor of caregiver depressive symptomatology. In addition, caregiver burden had a significant unique contribution to caregiver depressive symptomatology, with higher levels of burden associated with greater levels of caregiver depressive symptomatology. Higher levels of client behavioral problems and insufficient support from family members and mental health professionals related to the caregiving role were associated with higher levels of caregiver depressive symptomatology through their associations with care-giver burden. Caregiver race was not significantly related to caregiver burden or to caregiver depressive symptomatology after controlling for other variables. Over two-fifths of White caregivers and over one-quarter of Black caregivers were at risk for clinical depression. Implications for practice and research are discussed.     

Family members'perception of the quality of nursing home care

This study investigated the extent to which factors not directly related to the caregiving situation predicted family members' perceptions of the quality of nursing home care their elderly relative received. A conceptual model based on consumer satisfaction theory was used to test the extent to which factors associated with family members' expectations for care and their emotional response to the nursing home placement predicted perceptions of quality among 452 relatives representing the residents of two skilled care facilities. The entire model accounted for 27% of the variation in quality assessments. Attitudes towards nursing homes in general, length of resident stay and emotional responses to the placement (concern about the race/ethnicity of caregivers, caregiver burden and caregiver emotional distress) were found to be significant predictors of perceptions of quality.     

Caregiver expressed emotion and depression in Alzheimer's disease

Expressed Emotion (EE) has been a useful construct for understanding the relationship between family interactions and depression in patients with psychiatric disorders. It has not, however, been well studied in patients with Alzheimer's disease (AD) and their caregivers despite its potential utility in clarifying patient-caregiver interactions and how such interactions may affect patient function, and caregiver burden, mood and quality of care. This study investigated the rate of EE in caregivers of patients with AD and depression. It also investigated the relationship of caregiver EE to patient status and caregiver burden and depression. Fifty-seven AD patient-caregiver dyads were studied in a cross-sectional design. Caregiver measures included the EE Speech Sample, Burden Inventory, and Center for Epidemiological Studies-Depression Scale. Patient measures included the Hamilton Depression Rating Scale, Record of Independent Living, and Revised Memory and Behavior Problem Checklist. Twenty-three (40%) caregivers were high in EE, 34 (60%) were low. This percentage is higher than reported in normal older adults but is consistent with other psychiatric populations. High EE caregivers were significantly more likely to be clinically depressed and have higher levels of burden. They also endorsed fewer positive aspects of caregiving. No relationship was found between caregiver EE status and patient variables. Caregiver EE offers a novel approach to understanding important aspects of caregiver-patient interactions which may impact long term patient functioning and caregivers' ability to provide effective care.     

Effects of home, outside leisure, social, and peer activity on psychological health among Japanese family caregivers

Objective: Previous research has indicated that informal caregivers’ personal activities are disrupted by their caregiving role, leading to psychological stress and lower life satisfaction. However, the extent to which engagement in personal activities affects caregivers’ psychological health remains unclear. This study examines the relationship between different types and frequencies of activities and both positive and negative parameters of the psychological health of caregivers.

Methods: A mail survey was conducted with 727 family caregivers of older persons using adult day-care services in the Tokyo metropolitan area. Perceived caregiver burden, care satisfaction, life satisfaction, and depression were used as psychological health outcomes. Engagement in home, outside leisure, social, and peer activities, as well as caregiver and care-recipient characteristics and caregiving situations, were assessed using a multivariate regression analysis.

Results: Engagement in home activities was related to lower scores on burden and depression and greater care satisfaction after controlling for care needs and caregiver characteristics, and social and peer activities were associated with greater life satisfaction. More frequent engagement was also associated with better psychological health, but a moderate involvement in home activities was most strongly associated with better care satisfaction. The amount of outside leisure activity was not significantly related to any of the outcomes.

Conclusion: This study shows that activity type and frequency are associated with caregivers’ psychological health, extending previous findings and providing practical implications for the support of family caregivers through programs to improve their participation in specific types of activities.     

Caregiving appraisal after traumatic brain injury: The effects of functional status, coping style, social support and family functioning

Perception of caregiving after traumatic brain injury (TBI) has been shown to be an important part of both survivor and family adjustment. The roles of coping style, family functioning, perceived social support and the TBI survivor's functional status have not been fully examined with respect to appraisal of caregiving. This study examined these factors with respect to both positive and negative appraisals of caregiving in four main areas: perceived burden, caregiving relationship satisfaction, beliefs about caregiving, and mastery with caregiving. Sixty primary caregivers of individuals who sustained a TBI within the last 6 months to 15 years were administered the Caregiver Appraisal Scale, as well as the Coping Inventory for Stressful Situations, a 21-item version of the Family Assessment Device, and the Social Provision Scale. These findings were examined in relation to the TBI survivor's scores on the Disability Rating Scale and the Functional Independence Measure at the same time points post-injury. Results revealed that the majority of caregivers in those with moderate to severe brain injuries experienced dissatisfaction with many aspects of caregiving, especially with respect to feelings of burden and mastery. Additionally, emotionally-focused coping, behavioral control issues with respect to family functioning, and perceived social support appear to be most highly related to perceptions of burden, whereas perceived social support alone was the strongest factor in one's perception of caregiving mastery and satisfaction with the caregiving relationship. Interestingly, caregiving ideology was most closely related to avoidance-oriented coping. These results have direct implications for the development of interventions for caregivers of persons with TBI, especially with respect for the need to assess coping style and the development of social support networks.     

Psychosocial aspects of caregiving to stroke patients

A high percentage of individuals who have suffered a stroke will be cared for at home, primarily by aging spouses and/or relatives. Providing care to a family member with a chronic or life-threatening condition can be both emotionally rewarding and distressing for the care provider. The objective of this research was to test the factors associated with caregiver experiences. The findings of a convenience sample of 48 caregivers indicated that the higher the amount of caregiver burden, the greater the lifestyle impact and emotional distress for the caregiver. Caregiver satisfaction was not found to be associated with emotional well-being. The amount of support, both instrumental and social, did not improve the emotional well-being of the caregiver. The caregiver's sense of mastery was found to moderate the relationship between lifestyle impact and emotional well-being and also between caregiver satisfaction and emotional well-being.     

Predictors of caregiver satisfaction with mental health services

The objective of this study is to examine the relative contribution of three main factors (characteristics of services and service providers, characteristics of patients and caregivers, and impact of psychiatric illness) to caregiver satisfaction with services. Results of this study are based on the responses of 154 family caregivers of individuals with mental illnesses in Quebec, and indicate that these aspects play a predictive role in caregiver satisfaction with services. A multiple regression model explained 42% of the variance in satisfaction. Collaboration with professionals is the key determinant in the model, as it contributes more than any other variable to satisfaction. Results demonstrate the importance of obtaining a better understanding of caregivers’ satisfaction with services in order to increase their involvement in community integration.     

Family functioning in the caregivers of patients with dementia

BACKGROUND: Caregiver burden has been extensively studied in the dementia population. The marital relationship has been suggested as a mediational model through which variables influence the caregiver and contribute to the experience of burden or reward. OBJECTIVES: This study examines family functioning, caregiver burden and reward and quality of life in 38 family members caring for a relative with dementia. METHODS: Caregivers of out-patients with dementia completed self report questionnaires. RESULTS: 63% of caregivers were female with a mean age of 62 years. Patient mean age was 73 years. The average number of caregiving years was 3.1. Caregivers were more likely to be spouses (61%) than children (29%) or other relatives (11%). Despite the fact that caregivers reported that their relatives were moderately disabled, they perceived more reward than burden. Caregivers who reported poor family functioning had higher ratings of strain and burden. Family functioning in these caregivers was poorest in the dimensions of affective responsiveness, problem solving and communication but it was also impaired in roles and affective involvement. CONCLUSIONS: Assessing a family's functioning may be an important factor in the care of the dementia patient and his/her family.     

Frequency of behavioural problems at one year following traumatic brain injury: correspondence between patient and caregiver reports

A group of 62 adults with significant (i.e., ventilation required for > 24 hours) traumatic brain injury (TBI) were assessed approximately one year following their injury. The people with TBI and their primary caregivers completed the patient and relative/friend versions respectively, of the 20-item Head Injury Behaviour Rating Scale (HIBS). Responses by the patient and caregiver groups were compared for the total number of problems reported and the frequency of specific problem behaviours. The caregiver group reported a greater total number of problem behaviours and a higher frequency for 19 of the 20 specific behaviours. These differences between the patients' and caregivers' reports were statistically significant for seven of the 19 problem behaviours. The majority (86%) of these significant differences were on items from the Behavioural Regulation, rather than the Emotional Regulation, subscale of the HIBS. The implications of these findings for the practice of neuropsychological rehabilitation are presented.