Predictors of burden and depression among nursing home family caregivers

This study identified predictors of caregiver burden and depression among family caregivers to nursing home residents. Pearlin's stress process model was used as a theoretical framework. Structured interviews were conducted with 103 family caregivers to nursing home residents. Multiple regression analysis was used to determine the relationship of contextual variables (caregiver age, income, health), caregiving stressors (resident's memory and behaviour problems, caregiving tasks, satisfaction with nursing home), and social support with caregiver burden and depression. All three domains of predictor variables were significantly related to caregiver burden. Only contextual factors and social support predicted depression. Depression levels were elevated in this sample, with the mean falling above the cutoff for clinical depression. Family members of nursing home residents are at risk for caregiver burden and depression and each outcome has unique predictors in this population. Understanding factors associated with greater burden and depression can guide nursing home staff and mental health professionals in working with family members. Older family members, those in poor physical health or with low incomes are at highest risk, particularly for depression; while families of more impaired residents are at higher risk for burden. Social support is an important factor in alleviating burden and promoting positive mental health.     

Psychological distress among latino family caregivers of adults with schizophrenia: the roles of burden and stigma

OBJECTIVE: Little research has focused on the mental health of Latino caregivers with a relative with schizophrenia, despite data showing that up to three-quarters of Latino persons with schizophrenia live with their families. This study examined the relation between caregivers' mental health and perceived burden and stigma and characteristics of the patient and caregiver. METHODS: Interviews were conducted in the language of preference (Spanish or English) in Wisconsin, California, and Texas with 85 Latinos caring for an adult with schizophrenia. Measures included the Center for Epidemiologic Studies-Depression Scale, the Zarit Burden Scale, and the Greenley Stigma Scale. RESULTS: General population studies of Mexican Americans have found that between 12% and 18% meet the cutoff for being at risk of depression; however, 40% of the sample met this criterion. Younger caregiver age, lower levels of caregivers' education, and higher levels of the patients' mental illness symptoms were predictive of higher levels of caregivers' depressive symptoms. Caregivers' perceived burden mediated the relation between patients' psychiatric symptoms and caregivers' depression. Caregivers' perceived stigma was significantly related to caregivers' depressive symptoms, even when the analyses statistically adjusted for psychiatric symptoms and demographic variables. CONCLUSIONS: The high rates of depressive symptoms among Latino families caring for a relative with schizophrenia suggest that interventions should include attention to the mental health and recovery of family caregivers in addition to the patient's recovery. Younger Latino caregivers and those with lower levels of education are particularly at risk of depression.     

Cross-cultural study comparing the association of familism with burden and depressive symptoms in two samples of Hispanic dementia caregivers

Familism has been pointed out as a key value in Hispanic culture that may or may not be associated with caregiver distress. Although groups included in the Hispanic identity have many common features, differences between Hispanic sub-groups in the relationship of familism with burden and depressive symptoms remain unexplored. The association of familism with burden and depressive symptomatology was examined in 48 Hispanic dementia caregivers from Los Angeles (CA, USA) and 60 from Madrid (Spain) through path analyses. Burden and depressive symptomatology were positively and significantly related in both samples. Familism was significantly correlated with lesser burden in the USA Hispanic caregiver sample, but with higher levels of depressive symptoms in the Spanish sample. Significant differences between Hispanic samples were found in the relationship between familism, burden, and depression, denoting the importance of specific cultural contexts influencing dementia caregiving in Hispanics.     

Hispanic caregivers of adults with mental retardation: importance of family functioning

Our aim in this study was to validate a stress-process model for Hispanic caregivers of adults with mental retardation that incorporates family functioning. The model postulates that maladaptive adult behaviors are related to poorer family relationships and higher levels of family burden, which in turn is related to caregiver psychological distress and self-reported health. The 153 Hispanic caregivers were interviewed in their homes with structured interviews and self-report measures. We analyzed cross-sectional data using structural equation modeling. The hypothesized model provided an excellent fit to the data. Also, family relationships mediated the relationship between maladaptive adult behaviors and family burden, and higher levels of family burden were related to greater caregiver distress. Acculturation was negatively related to caregiver distress.     

Religiosity, psychosocial adjustment, and subjective burden of persons who care for those with mental illness

OBJECTIVE: The purpose of this study was to characterize the nature of religious and spiritual support received by family caregivers of persons with serious mental illness and to test hypotheses that religiosity would be associated with caregiver adjustment. METHODS: Eighty-three caregivers who participated in a study of the Family to Family Education Program of the National Alliance on Mental Illness were assessed at baseline in terms of their religiosity and receipt of spiritual support in coping. They also completed measures of depression, self-esteem, mastery, self-care, and subjective burden. Hierarchical regression was used to test hypotheses that religiosity would be associated with better adjustment, with confounding variables controlled for. RESULTS: Thirty-seven percent of participants reported that they had received spiritual support in coping with their relative's illness in the previous three months. When age, race, education, and gender were controlled for, religiosity was associated with less depression and better self-esteem and self-care. Personal religiosity was a stronger predictor of adjustment than religious service attendance. CONCLUSIONS: Family caregivers of persons with serious mental illness often turn to spirituality for support, and religiosity may be an important contributor to caregiver adjustment. Collaborative partnerships between mental health professionals and religious and spiritual communities represent a powerful and culturally sensitive resource for meeting the support needs of family members of persons with serious mental illness.     

The Psychological Impact of COVID-19 Pandemic and Lockdown on Caregivers of People With Dementia

BackgroundCaregivers of people with dementia (pwD) are at risk of depression, anxiety, and burden. COVID-19 pandemic and government-imposed lockdown as a preventive measure might increase psychological symptoms in caregivers. The authors performed a study to measure the change of psychological symptoms during quarantine or self-isolation for COVID-19 in a sample of Italian caregivers of pwD, and to investigate if the resilience is associated with psychological changes in the sample.MethodsEighty-four caregivers of pwD completed an online survey including questionnaires assessing depressive symptomatology and anxiety before and during the lockdown, caregiver burden and levels of resilience.ResultsThe multivariate analysis of variance revealed an effect of time (before and during the lockdown) in the whole group on depression scores; a significant interaction between time and resilience was found on anxiety scores, revealing that caregivers with high resilience showed a more significant increase of anxiety levels during lockdown than caregivers with low resilience. Moreover, the regression analysis revealed that caregiver burden was associated negatively with resilience scores, and positively with higher functional dependence.ConclusionCOVID-19 pandemic and the lockdown produced psychological consequences in caregivers of pwD, with an increase of levels of depression. Moreover, high resilience had a negative effect on anxiety levels and no effect on depressive symptomatology during the lockdown; moreover, it was associated with lower levels of caregiver burden. All caregivers, even those with high resilience levels, should be addressed to psychological interventions to reduce levels of depression, anxiety and caregiver burden.     

Sleep disturbances in spousal caregivers of individuals with Alzheimer's disease

BACKGROUND: Although sleep problems are commonly reported among dementia caregivers, the nature and frequency of caregiver sleep disruptions, and their relationship to health status, has received little empirical attention to date. METHODS: The current study investigated the sleep situations of a sample of 60 spousal caregivers currently residing with a Alzheimer disease care recipient, including the frequency of nocturnal disruptions by the care recipient, and the reasons for these disruptions. In addition, exploratory correlations were computed between caregiver sleep variables and health outcomes. RESULTS: Some 63% of spousal caregivers reported sleep disruptions due to the nocturnal behavior of the recipients of their care. Poorer caregiver sleep quality was associated with higher frequency of nocturnal disruptions by the care recipient, the care recipient needing to use the bathroom, and wandering, higher caregiver depressive symptoms, and higher levels of caregiver role burden. The frequency of nocturnal disruptions was associated with poorer mental health status and a greater number of depressive symptoms. CONCLUSIONS: Results suggest that nocturnal disruptions by the care recipient may have adverse health consequences for spousal caregivers, and that further study of the determinants of caregiver sleep quality and health outcomes are warranted.     

Emotional over-involvement can be deleterious for caregivers’ health

The study of emotional over-involvement (EOI) has focused primarily on its relationship with patients’ course of illness. We know little about the predictors and possible consequences of EOI for caregivers. Based on past research, we tested the hypotheses that EOI is associated with worse physical and psychological health among caregivers and examined whether caregiver burden and social support may mediate this relationship. Method In a sample of 37 Mexican American caregivers and their ill relatives recruited from two outpatient clinics, we examined the relationships between EOI, caregiver burden, caregivers’ level of social support, and caregivers’ health. Additionally, we examined whether caregiver burden and social support may mediate the relationship between EOI and caregivers’ health. Cross-sectional analysis indicates that at baseline EOI was not associated with caregiver burden or social support, but was related to worse current health. Longitudinal analysis, however, indicates that EOI at baseline was associated with greater burden, less instrumental support, and worse health among caregivers at follow-up. Moreover, objective burden and instrumental support mediated the relationship between EOI and several health outcomes. Consequently, EOI may be a marker of poor current health status and predicts worse future health among Mexican–American caregiving relatives of individuals with schizophrenia. Moreover, changes in burden and social support associated with EOI appear to mediate the relationship between EOI and several health outcomes among caregivers. These findings suggest that it might be important for family interventions to not only address the functioning of individuals with schizophrenia but also their caregiving relatives.     

Family health and characteristics in chronic fatigue syndrome, juvenile rheumatoid arthritis, and emotional disorders of childhood

OBJECTIVE: To compare family health and characteristics in children with chronic fatigue syndrome (CFS), in juvenile rheumatoid arthritis (JRA), and emotional disorders. METHOD: Parents of 28 children and adolescents aged 11 to 18 years with CFS, 30 with JRA, and 27 with emotional disorders (i.e., anxiety and/or depressive disorders) were recruited from specialty clinical settings and completed interviews and questionnaires assessing family health problems, parental mental distress, illness attitudes, and family burden of illness. RESULTS: Parents of children with CFS were significantly more likely than those of children with JRA to report a history of CFS-like illness, high levels of mental distress, and a tendency to experience functional impairment in response to physical symptoms. Families of children with CFS were characterized by significantly greater emotional involvement and reported greater family burden related to the child's illness in comparison with families of children with JRA. CONCLUSIONS: CFS in childhood and adolescence is associated with higher levels of parental CFS-like illness, mental distress, emotional involvement, and family illness burden than those observed in association with JRA, a chronic pediatric physical illness.     

Caregiving burden and psychiatric morbidity in spouses of persons with mild cognitive impairment

BACKGROUND: While the deleterious psychosocial and mental health effects of dementia caregiving are firmly established, very little is known about the burdens or psychiatric outcomes of providing care to a spouse with less severe cognitive impairment, such as mild cognitive impairment (MCI). We characterized the nature and level of caregiver burden and psychiatric morbidity in spouses of persons diagnosed with MCI. METHODS: Interview assessments were completed on a cohort of 27 spouses of persons with a recent diagnosis of MCI. Patient medical records were reviewed to collect information regarding the MCI patient's medical history. RESULTS: Respondents endorsed elevated levels of both task-related responsibilities and subjective caregiver burden. Depression and anxiety symptom levels also showed some elevations. Measures of caregiver burden were significantly associated with depression and anxiety levels. In particular, even after controlling for demographic risk factors for distress, nursing task burden was correlated with elevated depressive symptoms, and greater lifestyle constraints were correlated with higher anxiety levels. CONCLUSIONS: Although caregiver burden and psychiatric morbidity levels were lower than those typically observed in family dementia caregiving samples, our findings suggest that MCI caregivers have already begun to experience distress in association with elevated caregiving burden. These individuals may be ideal targets for selective preventive interventions to maximize their psychological well-being as caregiving burdens related to their spouses' cognitive impairment increase.     

Prevalence and correlates of burden among caregivers of patients with bipolar disorder enrolled in the Systematic Treatment Enhancement Program for Bipolar Disorder

OBJECTIVES: Caring for a relative with schizophrenia or dementia is associated with reports of high caregiver burden, symptoms of depression, poor physical health, negligence of the caregiver's own health needs, elevated health service use, low use of social supports, and financial strain. This study presents the design and preliminary data on the costs and consequences of caring for a relative or friend with bipolar disorder from the Family Experience Study, a longitudinal study of the primary caregivers to 500 patients enrolled in the Systematic Treatment Enhancement Program for Bipolar Disorder. METHODS: Subjects were primary caregivers of 500 patients with bipolar disorder diagnosed by the Mini International Neuropsychiatric Interview and the Affective Disorder Evaluation. Caregivers were evaluated within 1 month after patients entered Systematic Treatment Enhancement Program using measures of burden, coping, health/mental health, and use of resources and costs. RESULTS: Eighty-nine percent, 52%, and 61% of caregivers, respectively, experienced moderate or higher burden in relation to patient problem behaviors, role dysfunction, or disruption of household routine. High burden caregivers reported more physical health problems, depressive symptoms, health risk behavior and health service use, and less social support than less burden caregivers. They also provided more financial support to their bipolar relative. CONCLUSIONS: Burdens experienced by family caregivers of people with bipolar disorder are associated with problems in health, mental health, and cost. Psychosocial interventions targeting the strains of caregiving for a patient with bipolar disorder are needed.     

The relationship between objectively measured sleep disturbance and dementia family caregiver distress and burden

The aim of this study was to determine whether distress and burden were associated with objective measures of sleep disturbance in dementia caregivers. Using wrist actigraphy, sleep was measured in 60 female, Caucasian dementia family caregivers (mean age, 64.8 years). Caregivers completed questionnaires about demographics, health, depression, duration of caregiving and care recipient nighttime behavior. Care recipients completed a mental status exam. We investigated whether these measures were associated with actigraphic sleep parameters. Greater depressive symptoms among caregivers were associated with poorer sleep efficiency. Older caregiver age and poorer self-rated health were associated with longer time in bed. Sleep disturbance, which is common among dementia caregivers, might be an important index of caregiver distress (ie, depression) but might not be associated with burden (based on the care recipient's general cognitive impairment or nighttime awakenings.).     

Depressive symptom trajectories and associated risks among bereaved Alzheimer disease caregivers.

OBJECTIVES: A recent study concluded that depressive symptoms among caregivers decline on average from before to after the Alzheimer disease (AD) patient's death. The present study sought to determine if subgroups of bereaved AD caregivers follow distinctive depressive symptom trajectories and the characteristics associated with membership in depressive symptom subgroups. DESIGN: Latent class mixture models sought to identify clusters of homogeneous participants in the Resources for Enhancing Alzheimer's Caregiver Health study-a multisite, randomized caregiver intervention trial. PARTICIPANTS: One hundred eighty-two community-based bereaved caregivers were included in the study. MEASUREMENTS: The Center for Epidemiologic Studies Depression Scale assessed depressive symptoms among the AD caregivers at baseline and three follow-up visits. RESULTS: Three postloss depressive symptom trajectories emerged: persistently syndromal depression (N = 30, 16.5%); syndromal-becoming-threshold level depression (N = 62, 34.0%); and persistently absent depression (N = 90, 49.5%). Lower income, higher preloss depression levels, greater caregiver behavioral burden, less family support, and adverse health behaviors (e.g., smoking, skipped meals, and lack of exercise) after loss were risk factors for syndromal and syndromal-becoming-threshold level depression after loss. CONCLUSIONS: Early intervention to reduce caregiving behavioral burden and enhance family support and promote healthier behaviors of bereaved AD caregivers may decrease the risk of syndromal or syndromal-becoming-threshold level depression after loss.     

Predictors of burden among lower socioeconomic status caregivers of persons with chronic mental illness

This study uses a stress-coping-support framework to examine the predictors of caregiver burden with a sample of 103 lower social class family caregivers of persons with chronic mental illness. Results of multiple regression analyses show that the greater the frequency of client behavioral symptoms and the lower the amount of perceived support from family members, the higher the level of overall caregiver burden. Examination of the predictors of specific types of burden-family disruption, stigma, strain, and dependency-reveal that different constellations of variables predict different types of burden. The need for mental health agencies to address caregiver and client concerns is addressed. Implications are presented for practice and future research.Research for this paper was supported in part by grant #89-1022 from the Office of Program Evaluation and Research, Ohio Department of Mental Health and by the Center for Practice Innovations, Mandel School of Applied Social Sciences, Case Western Reserve University. Kyle Kercher, Ph.D., is thanked for providing statistical consultation for this paper, Elizabeth Robinson, Esther Sales and Mark Singer are thanked for reviewing an earlier draft of the paper.     

A systematic review of the prevalence and covariates of anxiety in caregivers of people with dementia

BACKGROUND: Caregiving for people with dementia has consistently been linked with psychological problems, usually in terms of caregiver burden, general psychological distress and depressive symptomatology, while morbidity due to anxiety has been relatively neglected in this group. METHODS: We conducted a systematic review of the literature, searching electronic databases, reference lists, relevant systematic reviews and contacting experts in the field. We used Centre for Evidence Based Medicine (CEBM) criteria for inclusion and rating the validity of all studies that reported (1) the prevalence, predictors and covariates of anxiety disorders or anxiety caseness, and (2) covariates and predictors of the level of anxiety symptoms. RESULTS: Thirty-three studies met our inclusion criteria. Clinically, significant anxiety affects about a quarter of caregivers for people with dementia and was more common than in matched controls. Such caregivers have higher anxiety levels than controls, and that confrontative and escape avoidance coping, caregiver burden and poorer caregiver physical health are factors associated with higher anxiety levels from cross-sectional studies. CONCLUSIONS: Coping style may be more associated with anxiety than depression while other covariates (burden and poor physical health) are similar to those for caregiver depression. We found no conclusive evidence about factors associated with anxiety disorders or predicting anxiety from longitudinal studies. Neither care recipient cognition nor ADL impairment; nor caregiver age nor duration of caring are associated with caregiver anxiety levels. Good quality cohort studies are needed to determine whether these factors also predict anxiety disorders.     

Use of mental health and primary care services by caregivers of patients with bipolar disorder: a preliminary study

OBJECTIVES: Caring for a relative with schizophrenia or dementia has been associated with reports of caregiver burden, symptoms of anxiety, depression, poor self-rated health, and elevated health service use; however, comparable data for caregivers of relatives with bipolar disorder are lacking. This study reports preliminary data on the health, psychological distress and health service use of caregivers of patients with bipolar disorder. It additionally evaluates the relationship of the level of burden caregivers report experiencing to their use of health services, controlling for level of psychological distress and health status. METHODS: Subjects were primary caregivers of 264 patients with Research Diagnostic Criteria-diagnosed bipolar disorder and their bipolar relatives. Caregiver mental health and primary care service use were assessed retrospectively for the 7-month period prior to inpatient or outpatient admission of the bipolar patient. Caregiver depression, anxiety, medical conditions and patient symptomatology were assessed as well. RESULTS: Hierarchical logistic regression analysis demonstrated that caregiver burden significantly increased the likelihood of mental health service use (OR = 13.53, p < 0.001) even after controlling for caregiver psychological distress and medical conditions, while anxiety and depression level, but not burden, significantly increased the likelihood of primary care service use, controlling for other variables (OR = 1.72, p = 0.02). CONCLUSIONS: Burdens experienced by family caregivers appear to increase use of health services, and presumably cost, and may be reduced by psychosocial intervention.     

Family‐focused treatment for caregivers of patients with bipolar disorder

Perlick DA, Miklowitz DJ, Lopez N, Chou J, Kalvin C, Adzhiashvili V, Aronson A. Family‐focused treatment for caregivers of patients with bipolar disorder.
Bipolar Disord 2010: 12: 627–637. © 2010 The Authors.
Journal compilation © 2010 John Wiley & Sons A/S. Objectives: Family members of patients with bipolar disorder experience high rates of subjective and objective burden which place them at risk for adverse physical health and mental health outcomes. We present preliminary efficacy data from a novel variation of Family Focused Treatment [Miklowitz DJ. Bipolar Disorder: A Family‐Focused Treatment Approach (2^nd ed.). New York: The Guilford Press, 2008] that aimed to reduce symptoms of bipolar disorder by working with caregivers to enhance illness management skills and self‐care. Methods: The primary family caregivers of 46 patients with bipolar I (n = 40) or II (n = 6) disorder, diagnosed by the Structured Clinical Interview for DSM‐IV Axis I Disorders, were assigned randomly to receive either: (i) a 12–15‐session family‐focused, cognitive‐behavioral intervention designed to provide the caregiver with skills for managing the relative’s illness, attaining self‐care goals, and reducing strain, depression, and health risk behavior [Family‐Focused Treatment‐Health Promoting Intervention (FFT‐HPI)]; or (ii) an 8‐ to 12‐session health education (HE) intervention delivered via videotapes. We assessed patients pre‐ and post‐treatment on levels of depression and mania and caregivers on levels of burden, health behavior, and coping. Results: Randomization to FFT‐HPI was associated with significant decreases in caregiver depressive symptoms and health risk behavior. Greater reductions in depressive symptoms among patients were also observed in the FFT‐HPI group. Reduction in patients’ depression was partially mediated by reductions in caregivers’ depression levels. Decreases in caregivers’ depression were partially mediated by reductions in caregivers’ levels of avoidance coping. Conclusions: Families coping with bipolar disorder may benefit from family interventions as a result of changes in the caregivers’ ability to manage stress and regulate their moods, even when the patient is not available for treatment.     

The predictive factors for perceived social support among cancer patients and caregiver burden of their family caregivers in Turkish population

Objectives: We aimed to identify the predictive factors for the perceived family social support among cancer patients and caregiver burden of their family caregivers.

Methods: Participants were 302 cancer patients and their family caregivers. Family social support scale was used for cancer patients, burden interview was used for family caregivers.All subjects also completed Beck depression invantery. The related socio-demographical factors with perceived social support (PSS) and caregiver burden were evaluated by correlation analysis. To find independent factors predicting caregiver burden and PSS, logistic regression analysis were conducted.

Results: Depression scores was higher among patients than their family caregivers (12.5 vs. 8). PSS was lower in depressed patients (p?p?p?r?=??2.97). Presence of depression (p?r?=?0.381) was positively correlated and family caregiver role was negatively correlated (p?r?=??0.208) with caregiver burden. Presence of depression was the independent predictor for both, lower PSS for patients and higher burden for caregivers.

Conclusions: The results of this study is noteworthy because it may help for planning any supportive care program not only for patients but together with their caregiver at the same time during chemotherapy period in Turkish population.     

Factors related to cognitive reserve among caregivers of severe acquired brain injury

Stroke is one of the severe cause of motor and cognitive disabilities. These type of disabilities occurred a strong impact on whole family system. Caregiver burden may determine in relatives of patients with brain injury a decreasement of mental and physical health. The present study aims to better clarify the mechanism through which chronic stress influence caregivers’ cognitive functioning and how the psychological and cognitive resources may represent as a predictive factor. Caregivers were submitted to neuropsychological tests that evaluated level of mental health ad level of burden. Our results showed a significant correlation between cognitive reserve and self-efficacy skills in health care of patients. Findings suggested that the caregiver burden and the level of general distress influenced the cognitive performance. An improvement of cognitive functions is associated with a reduction of self-efficacy skills, causing a caregiver burden improvement.     

Length of hospice enrollment and subsequent depression in family caregivers: 13-month follow-up study.

OBJECTIVE: Although more people are using hospice than ever before, the average length of hospice enrollment is decreasing. Little is known about the effect of hospice length of enrollment on surviving family caregivers. The authors examine the association between patient length of hospice enrollment and major depressive disorder (MDD) among the surviving primary family caregivers 13 months after the patient's death. METHODS: The authors conducted a three-year longitudinal study of 175 primary family caregivers of patients with terminal cancer who consecutively enrolled in the participating hospice from October 1999 through September 2001. Interviews were conducted with the primary family caregiver when the patient first enrolled with hospice and again 13 months after the patient's death. The authors used multivariate logistic regression models to estimate caregivers' adjusted risk at 13 months postloss for MDD, assessed using the Structured Clinical Interview for the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (SCID). RESULTS: The effect of very short hospice length of enrollment (three days or less) compared with longer lengths of enrollment on caregiver MDD 13 months after their loss was nonsignificant in unadjusted analyses. The adjusted risk of MDD was significantly elevated for caregivers of patients who had very short hospice enrollments (adjusted odds ratio: 8.76, 95%confidence interval: 1.09-70.19) only after adjusting for baseline MDD, caregiver gender, caregiver age, kinship relationship to patient, caregiver education, caregiver chronic conditions, and caregiver burden. The adjustment for caregiver burden resulted in the greatest increase in odds ratio for very short hospice length of enrollment on risk of caregiver MDD 13 months after the loss. CONCLUSIONS: This study identifies a potential target group of family caregivers, characterized by hospice length of enrollment and several caregiver features, who might be most in need of mental health interventions.