Burden in caregivers of older adults with advanced illness

OBJECTIVES: To examine caregiver burden over time in caregivers of patients with advanced chronic disease. DESIGN: Observational cohort with interviews over 12 months. SETTING: Community. PARTICIPANTS: Caregivers of 179 community‐living persons aged 60 and older with advanced cancer, heart failure (HF), or chronic obstructive pulmonary disease (COPD). MEASUREMENTS: Caregiver burden was assessed using a short‐form of the Zarit Burden Inventory to measure psychosocial distress. RESULTS: At baseline, the median caregiver burden was 5 (interquartile range (IQR) 1–11), which indicates that the caregiver endorsed having at least two of 10 distressing concerns at least some of the time. Only 10% reported no burden. Although scores increased modestly over time, the association between time and burden was not significant in longitudinal multivariable analysis. High burden was associated with caregiver need for more help with daily tasks (odds ratio (OR)=23.13, 95% confidence interval (CI)=5.94–90.06) and desire for greater communication with the patient (OR=2.53, 95% CI=1.16–5.53). The longitudinal multivariable analysis did not yield evidence of associations between burden and patient sociodemographic or health characteristics. CONCLUSION: Caregiver burden was common in caregivers of patients with cancer, HF, and COPD. High burden was associated with the caregiver's report of need for greater help with daily tasks but not with objective measures of the patient's need for assistance, such as symptoms or functional status, suggesting that burden may be a measure of the caregiver's ability to adapt to the caregiving role.     

Behavioral and psychological symptoms, cognitive impairment and caregiver burden related to Alzheimer's disease patients treated in an outpatient memory clinic

AIM: The relationships among behavioral and psychological symptoms of dementia (BPSD), cognitive impairment of Alzheimer's disease (AD) patients and the caregiver burden of their caregivers were investigated in an outpatient memory clinic. METHODS: Forty-six pairs of AD patients and their family caregivers were involved in this study. Neuropsychiatry Inventory (NPI) was used to estimate BPSD, to which memory symptoms were added as a subcategory of BPSD. MMSE, word fluency, clock drawing test and category-cued memory test were used for cognitive measurement. Zarit burden interview (ZBI) and CES-D were used to assess caregiver burden. RESULTS: Among 11 BPSD subcategories, memory symptoms, apathy, depression, delusion, aggression and anxiety were prevalent BPSD was a strong determinant of caregiver burden. Among BPSD symptoms, anxiety, aggression and aberrant motor behavior were significantly related to ZBL In terms of the relationship between BPSD and cognitive impairment, the scores for delusion and apathy were significantly related to the cognitive decline. On the other hand, patients who showed symptoms related to memory and depression had higher cognitive function than those who did not. CONCLUSION: These analyses will contribute to better assessment of AD patients and their caregivers, hopefully resulting in better support for them.     

Psychological functioning among vertically infected HIV-positive children and their primary caregivers

The current study sought to explore the association between primary caregiver depressive symptoms and the psychological functioning in children vertically infected with human immunodeficiency virus (HIV) living in Eastern Cape, South Africa. A cross-sectional data were collected using the Beck Depression Inventory and Strength and Difficulties Questionnaire in a sample of 152 caregiver/child dyads. The results revealed that poorer psychological functioning in children was significantly associated with depressive symptoms in caregivers. This relationship existed whether or not the child was raised by a biological or non-biological caregiver as well as for both genders. Younger children's psychological functioning was more negatively influenced than that of older children raised by a caregiver with depressive symptoms. In the context of a large treatment gap for common mental disorders in South Africa, there is a need for interventions to address maternal mental health in families infected and affected by the HIV/AIDS pandemic as a mental health promotion strategy given that HIV-infected children are a particularly vulnerable population for poor mental and behavioural health outcomes.     

The relationship of quality of life, depression, and caregiver burden in outpatients with congestive heart failure

Primary caregivers of patients with congestive heart failure withstand enormous burden, often sacrificing their own quality of life. The relationship between caregiver burden and depression and patient quality of life and depression in this setting is unknown. Fifty outpatients were prospectively administered the Minnesota Living with Heart Failure Questionnaire and Beck Depression Inventory II (BDI-II). Caregivers were administered the Zarit Caregiver Burden Interview and BDI-II. The mean quality of life score was 35, and 26% had a BDI-II score >10. The mean Zarit Caregiver Burden Interview score was 16. Minnesota Living with Heart Failure Questionnaire, BDI-II, and Zarit Caregiver Burden Interview scores were all associated with lower ejection fraction, need for hospitalization, increased number of medications, and comorbidities. Patient Minnesota Living with Heart Failure Questionnaire score correlated with patient BDI-II, caregiver BDI-II, and Zarit Caregiver Burden Interview scores. Caregiver burden score correlated with both caregiver BDI-II and patient BDI-II. Death or hospitalization at 6 months was associated with caregiver burden and depressive symptoms and with patient quality of life and depressive symptoms. Caregivers of patients with congestive heart failure experience high caregiver burden and prevalence of depressive symptoms, which are related to the patient disease burden.     

Domain-Specific Associations between Burden and Mood State in Dementia Caregivers

Research indicates that caregiver burden is related to caregiver mood state. The current study investigated the relationship between caregiver burden and affect via the Caregiver Burden Inventory and the Profile of Mood States. The sample was comprised of 31 female caregivers of individuals with dementia. Regression analyses revealed that developmental burden predicted caregiver tension-anxiety, and along with time dependence burden (an inverse predictor), was predictive of caregiver depression-dejection. Social burden emerged as a predictor of caregiver anger-hostility and confusion-bewilderment, and in conjunction with physical burden it predicted caregiver fatigue-inertia. The current findings are reviewed with regard to treatment implications.     

Family caregiver burden caused by behavioral and psychological symptoms of dementia: measurement with a new original scale

AIM: The purpose of this study was to measure the caregiver burden caused by behavioral and psychological symptoms of dementia (CBBD) using an originally developed scale and to estimate the CBBD scores in a large sample of family caregivers of elderly people. METHODS: The subjects were 1,818 users of the public Long-term Care Insurance, randomly stratified and sampled in Higashi-osaka city, Osaka prefecture. Data were collected through mailed, anonymous self-report questionnaires. The survey was conducted in October 2003. We created a 10-item CBBD scale based on previous studies on caregivers of dementia. The CBBD scale was applied to all caregivers regardless of dementia symptoms, and we also collected the following information: demographic data of the care-recipients and caregivers, the level of cognitive disorders of the care-recipient and the overall subjective caregiver burden. RESULTS: All items of the CBBD scale were selected at higher percentages by caregivers of care-recipients with cognitive disorders than caregivers of care-recipients without cognitive disorders. In particular, the relative risk and odds ratio of caregivers of care-recipients with cognitive disorder was higher in items such as 'the caregiver feels fear and anxiety about the care-recipient's unpredictable behavior', 'the care-recipient doesn't understand what the caregiver says', 'the caregiver feels irritated with incomprehensible care-recipient's behavior' which pose psychological stress or pressure on caregivers. On the other hand, the relative risk and odds ratio of the overall subjective caregiver burden was lower than that of any item of the CBBD scale. Furthermore, all CBBD items were related to symptoms of dementia (aroused/paranoid behavior, memory disorder, cognitive dysfunction, pica behavior). CONCLUSION: The CBBD scale had sensitivity for the care-recipient's cognitive disorder. In addition, it can detect more precisely the caregiver burden such as psychological stress or pressure due to the care-recipient's cognitive disorders, and it is also useful to assess the needs of caregivers who care for elderly family members with dementia.     

Quantitative evaluation of the burden of those giving home care for senile dementia of Alzheimer type subjects using the burnout scale of pines]

We quantitatively measured the physical and psychological burden of caregivers of 25 patients with senile dementia of Alzheimer type (SDAT). The Barthel Index (BADL, full score: 20 points) and the caregiver burden in terms of physical symptoms correlated well (r = -0.964, p < 0.001), as did the degree of abnormal behavior and caregiver burden in terms of psychological symptoms (r = 0.946, p < 0.001). The correlation with the burnout scale (BOS) of Pines was best when both factors of psychological and physical symptoms were included. The correlation between BOS and the caregiver burden in terms of both physical and psychological symptoms was r = 0.874, p < 0.001, and the correlation between BOS and "the degree of abnormal behavior" +(20- "BADL") was r = 0.853, p < 0.001. The burden in terms of physical symptoms increased as the BADL score decreased, but the burden in terms of psychological symptoms increased initially and decreased in the last phase of the disease. We conclude that the BOS score of SDAT caregivers was stable in the initial phase, then increased rapidly, thereafter preserved high, and dropped rapidly as the BADL score decreased.     

Caregiver burden and depression among informal caregivers of HIV-infected individuals

BACKGROUND: Few studies have examined the factors associated with depression in informal caregivers of HIV-infected persons. OBJECTIVE: To investigate the relationship between depression and caregiver burden among informal caregivers of HIV-infected individuals. DESIGN: Cross-sectional study using baseline data from an ongoing randomized trial of a supportive telephone intervention. PARTICIPANTS: One hundred seventy-six dyads of HIV patients and their informal caregiver. MEASUREMENTS: Depression was defined as a Beck Depression Inventory >10. A Caregiver Strain Index >6 identified informal caregivers with a high caregiver burden. We used logistic regression to identify characteristics that were associated with depression in the informal caregiver. RESULTS: Informal caregivers were 42 years old (SD, 13), 53% female, 59% nonwhite, and 30% had education beyond high school. Forty-seven percent of informal caregivers were the patient's partner, 18% a friend, and 35% a family member. Twenty-seven percent of informal caregivers had a high caregiver burden, and 50% were depressed. We found significantly greater odds of informal caregiver depression with high caregiver burden (OR, 6.08; 95% CI, 2.40 to 15.4), informal caregiver medical comorbidity besides HIV (OR, 2.32; 95% CI, 1.09 to 4.92), spending all day together (OR, 3.92; 95% CI, 1.59 to 9.69), having to help others besides the HIV patient (OR, 2.55; 95% CI, 1.14 to 5.74), and duration of the HIV patient's diagnosis (OR, 1.01 per month; 95% CI, 1.00 to 1.01). CONCLUSIONS: High caregiver burden was strongly associated with depression among HIV-infected individuals' informal caregivers, who themselves had difficult life circumstances. Informal caregivers of HIV patients may be in need of both mental health services and assistance in caregiving.     

A comparison of caregivers for elderly stroke and dementia victims.

OBJECTIVE: To compare elderly co-resident caregivers of stroke and dementia patients on measures of burden and psychological morbidity. DESIGN: Cohort study. SETTING: Caregivers interviewed at home. SUBJECTS: Convenience sample, 99 co-resident caregivers of dementia and stroke patients registered with a community rehabilitation and geriatric service and who were 60 years or over. MAIN OUTCOME MEASURES: Caregiver burden as measured by self-administered questionnaire and subsequent interview, using the Relatives Stress Scale (RSS) and psychological morbidity as measured on the General Health Questionnaire (GHQ). RESULTS: Forty-six percent of caregivers had significant psychological morbidity (GHQ greater than 4). Mean RSS score was 12.2 (SD 5.4). No significant differences were found between stroke and dementia caregivers on these measures. Caregiver burden was significantly correlated with psychological morbidity in both caregiver groups. Behavior and mood disturbance in the patient was significantly correlated with burden (dementia caregivers r = 0.66; stroke caregivers r = 0.49, P less than 0.0001) and psychological morbidity (dementia caregivers r = 0.44, P less than 0.01; stroke caregivers r = 0.30, P less than 0.05). Caregiver's dissatisfaction with participation in life activities was correlated with burden (dementia caregivers r = 0.58; stroke caregivers r = 0.63, P less than 0.0001) and psychological morbidity (dementia caregivers r = 0.67, stroke caregivers r = 0.56, P, 0.0001). CONCLUSION: Elderly co-resident caregivers for stroke and dementia patients experience similar degrees of burden and high levels of psychological morbidity. Psychiatric aspects of chronic disability, rather than physical aspects, were found to be more stressful to caregivers. All assessments of the disabled elderly should include measures of caregiver burden and psychological distress.     

Predictor of increase in caregiver burden for disabled elderly at home

In order to classify the caregivers at high risk of increase in their burden early, linear discriminant analysis was performed to obtain an effective discriminant model for differentiation of the presence or absence of increase in caregiver burden. The data obtained by self-administered questionnaire from 193 caregivers of frail elderly from January to February of 2005 were used. The discriminant analysis yielded a statistically significant function explaining 35.0% (Rc=0.59; d.f.=6; p=0.0001). The configuration indicated that the psychological predictors of change in caregiver burden with much perceived stress (1.47), high caregiver burden at baseline (1.28), emotional control (0.75), effort to achieve (-0.28), symptomatic depression (0.20) and "ikigai" (purpose in life) (0.18) made statistically significant contributions to the differentiation between no increase and increase in caregiver burden. The discriminant function showed a sensitivity of 86% and specificity of 81%, and successfully classified 83% of the caregivers. The function at baseline is a simple and useful method for screening of an increase in caregiver burden among caregivers for the frail elderly at home.     

Perceived Burden of Thai Caregivers for Older Adults After Stroke

Perception of caregiver burden among stroke survivors varies based on socioeconomic and cultural backgrounds. The objectives of this study were to identify the burdens among Thai caregivers of older stroke survivors, characteristics of caregivers and severity of caregiver burden. Caregivers of older stroke survivors were randomly interviewed (March–June, 2012). Information on baseline characteristics and caregiver burden using Zarit Burden Inventory (ZBI) was collected. One hundred one participants were assessed. The mean ZBI was 21.6 ± 14.5 [95% CI, 18.7–24.8]. More than half of caregivers reported no burden (54.5%). High burdens were associated with low self-reported income, high numbers of basic activities of daily living needed and coexisting musculoskeletal conditions. The observed low degree of burden might be the result of the sociocultural view of the study participants.     

Anosognosia and depression in patients with Alzheimer's dementia

Anosognosia refers to impaired awareness of patients to realize deficits related to a disorder and is a common symptom of dementia. Anosognosia has far-reaching consequences for diagnosis and treatment and is probably associated with unfavorable prognosis. This study examined the relationship between anosognosia and depression in patients with Alzheimer's dementia (AD). Assessment included interviews of patients and their caregivers. Depressive symptoms were evaluated with observer and self-rating instruments: the Geriatric Depression Scale (GDS), and the “mood” subscale of the Nurses Observation Scale for geriatric patients (NOSGER). Anosognosia was evaluated with the Anosognosia Questionnaire for Dementia (AQ-D). For the evaluation of behavioral and neuropsychological symptoms in dementia and the caregiver burden, the neuropsychiatric inventory (NPI) and the Cares of older People in Europe (COPE) Index were administered. A total of 47 patients were enrolled in the study at the department's geriatric psychiatry outpatient clinic. A considerable discrepancy was found between observer- and self-ratings of depressive symptoms. In 74.5% of the participants, caregiver ratings indicated secondary symptoms of depression as opposed to patient ratings. Thus, in AD, anosognosia may affect not only deficits in cognition and everyday functioning but also affective symptoms (“affective anosognosia”). Caregiver rating therefore is particularly important when assessing mood changes in AD patients.     

Prevalence and outcomes of caregiving after prolonged (> or =48 hours) mechanical ventilation in the ICU

OBJECTIVES: (1) To estimate caregiver support required by patients 2 months after prolonged (at least 48 h) mechanical ventilation (MV) in an ICU; (2) to describe caregiver burden, caregiver depressive symptomatology, and caregiver limitations in activities; and (3) to investigate factors related to depressive symptoms at 2 months in caregivers. DESIGN: Prospective cohort study. STUDY PARTICIPANTS: Caregivers of 115 patients who received prolonged MV in an ICU. MEASUREMENTS: Sociodemographics, employment status, hours spent providing care, help from paid caregiving sources, caregiver burden, and caregiver depressive symptoms. RESULTS: The proportion of patients who survived at least 2 months and required caregiver support was 74.8%. The average age of caregivers was 52.9 years (SD, 14.2), 76.5% were women, and more than half were spouses (52.2%). Only 33 of the caregivers (28.7%) were working, and 30.3% had to reduce their time spent at work to provide care to the patient. The prevalence of risk of clinical depression (defined as Center for Epidemiological Studies depression scale [CES-D] score > or =16) among caregivers was 33.9%. The mean caregiver CES-D score was 13.2 (SD, 11; median, 10). Multiple linear regression analysis showed that higher CES-D score was associated with more hours per day helping with patients' activities of daily living and instrumental activities of daily living (p = 0.003). CONCLUSIONS: Two months after being placed on MV for at least 48 h, a high proportion of patients need caregiver support. Approximately 34% of caregivers are at risk of clinical depression. Many caregivers report lifestyle changes and burden when providing care for the patients.     

The role of family functioning in the stress process of dementia caregivers: a structural family framework

PURPOSE: The purpose of the study was to evaluate the role of family functioning in the stress process in a sample of caregivers of dementia patients by using a structural family framework. The stress-process model of caregiver distress included family functioning as an intervening variable in the relationship between objective burden and distress. We theorized family functioning to partially mediate the relationship between objective burden and distress and to significantly account for the prediction of distress beyond well-recognized predictors. DESIGN AND METHODS: One hundred eighty-one family caregivers from the Miami site of the Resources for Enhancing Alzheimer's Caregiver Health project participated in this study. We assessed sociodemographics, burden, depression, anxiety, and perceived health for each caregiver. We measured family functioning by using a multidimensional and observational instrument. We used structural equation modeling to assess the fit of the model for the overall sample and for different caregiver subgroups and to examine whether demographic variables affected the relationships in the model. RESULTS: The results of the study indicated that family functioning significantly contributed to distress in the overall sample and partially mediated the relationship between objective burden and distress. We also found that the stress-process model was adequately fit by the hypothesized relationships between objective burden, family functioning, and distress for the overall sample and all of the subsamples, except for wives. IMPLICATIONS: This study provides support for the structural family approach as an explanatory model for the influence of family functioning on dementia caregivers. Family structural functioning is one contributor to the caregiver stress process. This suggests that interventions targeting structural family problems may reduce caregiver distress.     

Caregiver burden and depressive symptoms: analysis of common outcomes in caregivers of elderly patients

Despite widespread use of caregiver burden and depressive symptoms in caregiving research, the relationship between these two concepts and the way in which burden and depressive symptoms are affected are not clear. METHODS: The authors used structural equation modeling with an inception cohort of 488 family caregivers to examine the relationship between care recipients' mental and functional status and recency of care demands and caregivers' burden and depressive symptoms. RESULTS: Care recipients' mental and functional status and recency of care demands predicted caregiver burden; burden, in turn, was nearly significant in predicting depressive symptoms. Care recipients' mental status and recency of care demands had a near significant indirect effect on caregiver depressive symptoms. There were no significant direct paths between care recipients' mental status, functional status, recency of care demands, and caregivers' depressive symptoms. DISCUSSION: Health care practitioners should assist caregivers with new care demands stemming from care recipients' mental and functional status to decrease burdens and should monitor caregivers with higher levels of burden for the development of depressive symptoms.     

Anosognosia and depression in patients with Alzheimer's dementia

Anosognosia refers to impaired awareness of patients to realize deficits related to a disorder and is a common symptom of dementia. Anosognosia has far-reaching consequences for diagnosis and treatment and is probably associated with unfavorable prognosis. This study examined the relationship between anosognosia and depression in patients with Alzheimer's dementia (AD). Assessment included interviews of patients and their caregivers. Depressive symptoms were evaluated with observer and self-rating instruments: the Geriatric Depression Scale (GDS), and the “mood” subscale of the Nurses Observation Scale for geriatric patients (NOSGER). Anosognosia was evaluated with the Anosognosia Questionnaire for Dementia (AQ-D). For the evaluation of behavioral and neuropsychological symptoms in dementia and the caregiver burden, the neuropsychiatric inventory (NPI) and the Cares of older People in Europe (COPE) Index were administered. A total of 47 patients were enrolled in the study at the department's geriatric psychiatry outpatient clinic. A considerable discrepancy was found between observer- and self-ratings of depressive symptoms. In 74.5% of the participants, caregiver ratings indicated secondary symptoms of depression as opposed to patient ratings. Thus, in AD, anosognosia may affect not only deficits in cognition and everyday functioning but also affective symptoms (“affective anosognosia”). Caregiver rating therefore is particularly important when assessing mood changes in AD patients.     

Cognitive functioning in spousal caregivers of dementia patients: findings from the prospective MAASBED study

BACKGROUND: Spousal caregivers are usually of the same age as the dementia patient and therefore at risk of age-related cognitive decline. Suboptimal cognitive functioning in caregivers may have profound implications. METHODS: Fifty-four spousal caregivers of dementia patients from the Memory Clinic of the Academic Hospital Maastricht and the Regional Institute for Community Mental Health Care in the Netherlands were compared with 108 non-caregiving controls. Data were collected on patient and caregiver characteristics and caregiver cognitive functioning. Repeated measures statistical analyses were carried out to investigate the relationship between caregiver cognitive functioning at baseline and patient behavioural problems and caregiver competence during 1 year of follow-up. RESULTS: Caregivers performed significantly worse on several cognitive domains compared with control subjects. Low performance on a verbal memory task was related to a decrease in caregiver subjective competence and an increase in patient hyperactivity. CONCLUSION: The results indicate that screening for cognitive impairment of spousal caregivers may be helpful, because suboptimal cognitive functioning may affect the ability to provide adequate care.     

About the Editors: Biographies and Addresses

Informal caregivers, mainly family members, of persons with Parkinson's disease (PD) are usually burdened with quite different loads of stress. Over the past decade, there is no consistent outcome on the association between characteristics of caregivers and patients (as stress sources), and caregiver distress. This meta-analysis integrated findings from 10 studies on the correlates of caregiver distress in terms of depressive symptoms, burden, as well as stress induced by the caregiving role. The results showed that motor symptoms of patients with PD had the strongest relationship with caregiver distress. Increased motor symptoms and higher dependency in activities of daily living showed the highest effect sizes on caregiver distress (|r|?=?.42 –.43) than did patients' higher level of depression (r?=?.37), more advanced disease stage (r?=?.33), longer duration of disease (r?=?.31), as well as poorer cognitive functioning level (|r|= .28). Among the characteristics of caregivers, only intensity of caregiving was significantly related to higher caregiver distress (r?=?.46).