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.     

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.     

The Effects of Declining Functional Abilities in Dementia Patients and Increases in Psychological Distress on Caregiver Burden Over a One-Year Period

The degree to which changes in caregiver burden over a one-year period can be predicted by functioning of dementia patients and caregiver psychological stress was examined. The Direct Assessment of Functional Status (DAFS) was administered to 44 patients and the Caregiver Burden Inventory and the Brief Symptom Inventory were administered to their next-of-kin caregivers. All patients and caregivers were assessed at baseline and again in approximately one year with the same measures. Hierarchical regression revealed that baseline patient functioning predicted overall changes in caregiver burden, but that increases in psychological symptoms of caregivers such as depression, anxiety, and hostility were the best predictors for specific types of increased caregiver burden, such as social, developmental, or physical burden. These results suggest that interventions should target reduction of particular psychological symptoms in order to reduce caregiver burden over time.     

Major depression among medically ill elders contributes to sustained poor mental health in their informal caregivers

BACKGROUND: No longitudinal studies have addressed the effect of late life depression on the physical and mental health status of their informal caregivers. OBJECTIVE: To examine whether a diagnosis of depression in older medical inpatients is associated with the physical and mental health status of their informal caregivers after 6 months, independent of the physical health of the care recipient. DESIGN: Longitudinal observational study with 6-month follow-up. SETTING: Two Montreal acute-care hospitals. SUBJECTS: A sample of 97 cognitively intact medical inpatients aged 65 and over and their informal caregivers, with oversampling of patients with a diagnosis of major or minor depression. METHODS: Patient data included depression (current diagnosis, duration of current diagnosis, severity of symptoms, and history of depression), physical health (severity of illness, comorbidity, premorbid disability), and cognitive impairment. Caregiver data included relationship to patient, co-residence, and the physical and mental health status subscales of the SF-36. Multivariate linear regression analyses were conducted to determine the relationship between patient depression and caregiver 6 month SF-36 physical and mental scores, adjusting for baseline values, patient comorbidity, disability, and other patient and caregiver variables. RESULTS: Patient characteristics included: mean age 79.3, 62% female, 46% major depression, 18% minor depression, 36% no depression. Caregiver characteristics included: 73% female, 35% co-resident spouse, 15% other co-resident relation, 50% not residing with the patient. Results of the multivariate analyses showed that in comparison with caregivers of patients without a current diagnosis of depression, caregivers of those with major depression had a lower mental health score at follow-up (-9.54, 95% CI -16.66, -2.43), even though their physical health was slightly better (5.42 95% CI 0.04, 10.81). CONCLUSIONS: A diagnosis of major depression in older medical inpatients is independently associated with poor mental health in their informal caregivers 6 months later.     

Correlates of depression and burden for informal caregivers of patients in a geriatrics referral clinic

Caregiver burden has been associated with patient dementia. In this study we tested the hypothesis that caregiver burden and depression are related to patient cognitive impairment. We analyzed records of 127 elderly male patients from a Veterans hospital geriatrics referral clinic. The patients and their informal caregivers had been referred to the clinic because the complexity and multiplicity of their problems were beyond the treatment capability of other clinics. There was a high prevalence of dementia (73%) and depression (69%) in these patients according to Diagnostic and Statistical Manual (DSM-III) criteria. Quantitative measures of patient dementia and dependency in activities of daily living were not statistically associated with measures of caregiver depression or burden. In contrast, measures of patient depression were significantly correlated with measures of caregiver depression and burden. We hypothesize that caregivers of chronically ill, elderly men cope better with physical and cognitive incapacity than with affective symptoms. Because caregiver support is the most important factor in maintaining a disabled elder in the community, we suggest evaluating patients and caregivers for depression as part of standard practice in geriatric clinical settings.     

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.     

The Situation of Caregivers in Heart Failure and Their Role in Improving Patient Outcomes

This paper describes experiences of caregivers to patients with heart failure and their role in improving patient outcomes. Being related to and caring for someone with heart failure involves several prominent changes in daily life that may sometimes be experienced as stressful and burdensome. Since heart failure is a chronic condition, the burden will be permanent and sometimes increases during the illness trajectory. Caregiver burden increases if the caregiver experiences poor mental and/or physical health, limitations in daily life, isolation, loneliness and a lack of sufficient social and professional support. Interventions to reduce caregiver burden should focus on improving social support, providing knowledge of heart failure and increasing the perceived control over the situation. To date, there is limited research evaluating effects of psycho-educational interventions. The few studies that have been conducted reported neutral effects, despite having included structured education and individualized support as requested by caregivers. There is still a knowledge gap on how to fulfill the caregiver’s often unmet need for support. Therefore, research on developing and evaluating new family-focused interventions is warranted.     

How effective are interventions with caregivers? An updated meta-analysis

PURPOSE: The purpose of this study was to determine the effectiveness of interventions for family caregivers of older adults. DESIGN AND METHODS: Meta-analysis was used to synthesize the effects of 78 caregiver intervention studies for six outcome variables and six types of interventions. RESULTS: The combined interventions produced a significant improvement of 0.14 to 0.41 standard deviation units, on average, for caregiver burden, depression, subjective well-being, perceived caregiver satisfaction, ability/knowledge, and care receiver symptoms. Intervention effects were larger for increasing caregivers' ability/knowledge than for caregiver burden and depression. Psychoeducational and psychotherapeutic interventions showed the most consistent short-term effects on all outcome measures. Intervention effects for dementia caregivers were smaller than those for other groups. The number of sessions, the setting, care receiver age, caregiver age, gender, type of caregiver-care receiver relationship (spouse vs adult child), initial burden, and study characteristics moderated the observed effects. IMPLICATIONS: Caregiver interventions are effective, but some interventions have primarily domain-specific effects rather than global effects. The differences between intervention types and moderators suggest ways of optimizing interventions.     

The impact of metrifonate therapy on caregivers of patients with Alzheimer's disease: results from the MALT clinical trial. Metrifonate in Alzheimer's Disease Trial

OBJECTIVE: To assess the impact on burden reported by caregivers of patients with mild to moderate Alzheimer's disease (AD) who were treated with metrifonate during a randomized double blind clinical trial. DESIGN: Randomized clinical trial, with a 2-week screening period and a 26-week double blind, placebo controlled, treatment phase. Caregivers were assessed at baseline, at 12 weeks, and at end of trial. SETTING: Caregivers were interviewed at clinics as part of the assessment of the patients. PARTICIPANTS: Six hundred and three caregivers of AD patients who were enrolled in the MALT trial; 591 (98%) provided data suitable for analysis at baseline, and 546 (91%) provided data allowing for inclusion in the analysis of change scores. MEASUREMENTS: The Caregiver Burden Assessment consisted of the Screen for Caregiver Burden, including both subjective (SCB-subj) and objective (SCB-obj) scores; the cognitive subscale of Poulshock and Deimling (PD); an abridged version of the Relatives Stress Scale (aRSS); assessments of time spent in providing care, including the Caregiver Activity Time Scale (CATS); and demographic and background variables on both the patient and caregiver. RESULTS: Treatment of mild to moderate AD patients with metrifonate for a duration of 26 weeks significantly reduced the psychological burden of care to the caregivers, as measured by the SCB-subj, the PD, and the aRSS. There were no statistically significant differences on the measures assessing the time spent in caregiving, except for the caregiver's subjective impression of the change in time spent providing care during the trial. When comparing individual dose groups, most of the measures of burden showed the largest benefits in burden for the 60/80 mg group, followed by the 40/50 mg group, and then the placebo group. However, there was no statistically significant dose effect. CONCLUSIONS: This study provides the first evidence from a randomized clinical trial of any acetylcholinesterase inhibitor used in the treatment of AD demonstrating a positive impact on the patient's caregiver as well as benefits to the patient. These results were shown consistently across several measurement scales and were observed after six months of treatment. These findings reinforce the clinical significance of research that has shown that metrifonate has beneficial impacts on the cognitive, behavioral, and functional abilities of AD patients. Because caregiver burden is a leading factor in the decision for institutional care placement, the ability to favorably impact that burden through pharmacological treatment of the patient is important.     

Concordance of race or ethnicity of interventionists and caregivers of dementia patients: relationship to attrition and treatment outcomes in the REACH study

PURPOSE: We assess the effects of racial or ethnic concordance between caregivers and interventionists on caregiver attrition, change in depression, and change in burden in a multisite randomized clinical trial. DESIGN AND METHODS: Family caregivers of patients with Alzheimer's disease were randomized to intervention or control groups at six sites from 1996 to 2000. Interventionists provided psychosocial interventions aimed at decreasing caregiver depression and burden. This analysis included 694 caregivers who received face-to-face interventions from 36 interventionists at five sites. We modeled caregiver loss to follow-up at 12 months and changes in depression and burden from baseline by racial or ethnic concordance by using random effects logistic and linear regression models, controlling for caregiver age, gender, race or ethnicity, relation to care recipient, interventionist race or ethnicity, and care recipient activities of daily living. The loss to follow-up model also controlled for care recipient institutionalization and death. RESULTS: Overall, there was no difference in caregiver loss to follow-up or change in depression or burden by racial or ethnic concordance. African-American caregivers with an interventionist of the same race or ethnicity had greater decreases in depression than did African-American caregivers with interventionists of a different race or ethnicity. However, this finding has to be interpreted cautiously because there were only two African-American interventionists. IMPLICATIONS: Although these initial findings do not provide conclusive evidence on whether racial or ethnic concordance is associated with intervention outcomes for caregivers of Alzheimer's disease patients, these results, along with the paucity of research studies evaluating this issue, suggest that the effects of racial or ethnic concordance in research should be systematically examined in future studies.     

The Caregiver Burden Inventory in evaluating the burden of caregivers of elderly demented patients: results from a multicenter study

BACKGROUND AND AIMS: The burden perceived by caregivers of patients with dementia is a fundamental prognostic aspect in the history of the disease. The aim of this study was to demonstrate the internal consistency of the Caregiver Burden Inventory (CBI), a scale used to quantify burdens in different aspects of a caregiver's life, and the influence of patients' and caregivers' characteristics on its different dimensions. METHODS: In this cross-sectional study, 419 demented patients and their caregivers were evaluated in 16 geriatric centers in Italy. Cognitive status and behavioral disturbances were assessed by the Mini Mental State Examination (MMSE) and Neuropsychiatric Inventory (NPI), respectively. Activities of Daily Living (ADL) and Instrumental Activities of Daily Living (IADL) were also evaluated. Comorbidity was assessed by the Cumulative Illness Rating Scale (CIRS). The severity of dementia was evaluated by the Clinical Dementia Rating (CDR) score. Caregiver distress due to the behavioral problems of the patient was assessed by the Neuropsychiatric Inventory-Distress, a subscale of the NPI which evaluates stress caused by each behavioral disturbance of the patient, and by the Brief Symptom Inventory which evaluates anxiety and depression. Burden was evaluated by the CBI. RESULTS: The CBI showed very high internal consistency (Cronbach's alpha value > 0.80). Factor analysis showed that the items clustered into four dimensions, and not five as originally proposed. Multiple regression analysis revealed that patients' behavioral disturbances and disability were the major predictors of the time-dependent burden; the psychophysical burden was explained mainly by caregiver anxiety and depression. CONCLUSIONS: The CBI proved to be an effective multidimensional tool for evaluating the impact of burden on many aspects of caregivers' lives.     

Treatment of Late-Life Depression Alleviates Caregiver Burden

OBJECTIVES: To describe the burden experienced by family caregivers of older adults with depression and to examine the positive effects on caregivers of treating late-life depression.
DESIGN: Two-phase treatment study for major depressive disorder (MDD) that included 6 weeks of open treatment with antidepressant medication for all older patients followed by 16 weeks of randomized treatment for patients who were partial responders, comparing a combination of medication and interpersonal psychotherapy with medication alone.
SETTING: Primary care and university late-life mental health research clinic.
PARTICIPANTS: Adults aged 60 and older participating in a randomized trial for treatment of MDD who enrolled in a family caregiver study and their caregiver (N=244 dyads).
MEASUREMENTS: Improvement in patient symptoms during open treatment (lower scores on the Hamilton Rating Scale for Depression (HRSD)) and remission of depression during randomized treatment (3 consecutive weekly HRSD scores of ≤7) were examined as predictors of lower general caregiver burden and burden specific to patient depression.
RESULTS: Caregivers reported a moderate to high level of general caregiver burden on average. Change in patient depression during open treatment was associated with significantly decreased depression-specific burden (β=−0.22, P =.001) and a trend toward lower general burden (β=−0.08, P =.08). Caregivers of patients who remitted showed significantly decreased depression-specific burden ( F (1,76)=4.27, P =.04).
CONCLUSION: Treatment of late-life depression has benefits that extend to the family members on whom patients depend. Caregiver education and support may strengthen these effects.     

Predicting caregiver burden and depression in Alzheimer's disease

OBJECTIVES: The purpose of this study was to investigate the predictors of caregiver burden and depression, including objective stressors and mediation forces influencing caregiving outcomes. METHODS: This investigation is based on the 1994 Canadian Study of Health and Aging (CSHA) database. Participants were 613 individuals with dementia, living in either the community or an institution, and their informal caregivers. Participants for the CSHA were identified by screening a large random sample of elderly persons across Canada. Structural equation models representing four alternative pathways from caregiving stressors (e.g., functional limitations, disturbing behaviors, patient residence, assistance given to caregiver) to caregiver burden and depression were compared. RESULTS: The data provided the best fit to a model whereby the effects on the caregiver's well-being are mediated by appraisals of burden. A higher frequency of disturbing behavior, caring for a community-dwelling patient, and low informal support were related to higher burden, which in turn led to more depressive symptomatology. Caregivers of patients exhibiting more disturbing behaviors and functional limitations received less help from family and friends, whereas those whose care recipients resided in an institution received more informal support. DISCUSSION: Our findings add to the preexisting literature because we tested alternative models of caregiver burden using an unusually large sample size of participants and after overcoming methodological limitations of past research. Results highlight the importance of the effective management of disturbing behaviors, the provision of formal services for caregivers with highly impaired patients and no informal support, and the improvement of coping skills in burdened caregivers.     

Informal caregiver burden among survivors of prolonged mechanical ventilation

RATIONALE: Although caregiver burden is well described in chronic illness, few studies have examined burden among caregivers of survivors of critical illness. In existing studies, it is unclear whether the observed burden is a consequence of critical illness or of preexisting patient illness. OBJECTIVES: To describe 1-yr longitudinal outcomes for caregivers of patients who survived critical illness, and to compare depression risk between caregivers of patients with and without pre-intensive care unit (ICU) functional dependency. METHODS: Prospective, parallel, cohort study of survivors of prolonged (greater than 48 h) mechanical ventilation and their informal caregivers. Caregivers were divided into two cohorts on the basis of whether patients were functionally independent (n = 99, 59%), or dependent (n = 70, 41%) before admission. Functional dependency was defined as dependency in one or more activities of daily living or in three or more instrumental activities of daily living. Patient and caregiver outcomes were measured 2, 6, and 12 mo after mechanical ventilation initiation. MEASUREMENTS AND MAIN RESULTS: We studied three caregiver outcomes: depression risk, lifestyle disruption, and employment reduction. Most patients were male (59.8%), with a mean (SD) age of 56.6 (19.0) yr. Caregivers were mostly female (75.7%), with a mean (SD) age of 54.6 (14.7) yr. Prevalence of caregiver depression risk was high at all time points (33.9, 30.8, and 22.8%; p = 0.83) and did not vary by patient pre-ICU functional status. Lifestyle disruption and employment reduction were also common and persistent. CONCLUSIONS: Depression symptoms, lifestyle disruption, and employment reduction were common among informal caregivers of critical illness survivors. Depression risk was high regardless of patient pre-ICU functional status.     

Effect of Caregiver Family Status on Care Recipient Symptom Severity and Caregiver Stress at Nursing Home Intake

The present research investigates differences between primary informal caregivers who were in the care recipient's immediate family (adult children or spouses) versus those primary caregivers who were outside the immediate family. Measurement occurred at the time of admission of the care recipient to an urban nursing home. We hypothesized that immediate family caregivers would report greater behavioral disturbance among care recipients and increased caregiver depression and stress. Data were collected from 115 consecutive caregiver-elder dyads at nursing home intake. Non-immediate family caregivers comprised 43% of the sample. Consistent with our hypotheses, immediate family caregivers reported significantly greater caregiver depression and caregiver stress. Immediate family care recipients demonstrated greater behavioral disturbance. Implications for policy and caregiver interventions are discussed.     

Effect of Caregiver Family Status on Care Recipient Symptom Severity and Caregiver Stress at Nursing Home Intake

The present research investigates differences between primary informal caregivers who were in the care recipient's immediate family (adult children or spouses) versus those primary caregivers who were outside the immediate family. Measurement occurred at the time of admission of the care recipient to an urban nursing home. We hypothesized that immediate family caregivers would report greater behavioral disturbance among care recipients and increased caregiver depression and stress. Data were collected from 115 consecutive caregiver-elder dyads at nursing home intake. Non-immediate family caregivers comprised 43% of the sample. Consistent with our hypotheses, immediate family caregivers reported significantly greater caregiver depression and caregiver stress. Immediate family care recipients demonstrated greater behavioral disturbance. Implications for policy and caregiver interventions are discussed.     

Frontal function, disability and caregiver burden in elderly patients with major depressive disorder

Caregivers of patients with late-life major depressive disorder experience a significant level of general caregiver burden. Disability in patients is possibly one of the origins of caregiver burden. Frontal lobe dysfunction might be the source of disability. This study investigated if frontal lobe dysfunction (body level) of patients with late-life major depressive disorder was associated with their disability (individual level), and if it led to a high level of caregiver burden (societal level). Thirty-four unselected pairs of caregivers and their family members with late-life major depressive disorder were recruited. Frontal Assessment Battery and Timed Instrumental Activities of Daily Living (TIADL) were used to assess patients' frontal function and disability, and Caregiver Burden Inventory was used to measure caregiver burden. Frontal Assessment Battery correlated with TIADL (r= -0.47; p<0.006). TIADL score was also associated with two subscales of the Caregiver Burden Inventory: social (r = 0.38, p=0.026) and time-dependent (r= 0.37, p= 0.033). This study supported the hypothesis that frontal lobe dysfunction in elderly patients with depression is associated with their disability in instrumental activities of daily living. Disability is related to social and time-dependent aspects of caregiver burden. Further studies to examine proposed cognitive interventions are suggested to reduce patient disability and caregiver burden.     

Caregiver characteristics are associated with neuropsychiatric symptoms of dementia

OBJECTIVES: To determine whether caregiver characteristics are independently associated with neuropsychiatric symptoms of dementia (NPS) after accounting for patient characteristics. DESIGN: Cross-sectional analysis of data from the Medicare Alzheimer's Disease Demonstration and Evaluation study. SETTING: Community-dwelling residents in eight U.S. cities. PARTICIPANTS: Five thousand seven hundred eighty-eight patients with dementia and their caregivers. MEASUREMENTS: Caregivers were asked about the presence of 12 NPS in patients with dementia. Caregiver predictors included age, sex, education, income, marital status, relationship to the patient, whether they lived with patient, number of hours per week spent caregiving, self-reported health, dependency in activities of daily living (ADLs) and instrumental activities of daily living (IADLs), depression, and burden. Multivariate linear regression was used to determine which caregiver characteristics were independently associated with reports of more NPS in patients after controlling for the patient's age, sex, dementia severity, level of ADL dependency, and dementia type. RESULTS: Caregivers were on average 64 years old, 72% female, and 49% were the spouse of the patient (32% wives, 17% husbands). The mean burden score of caregivers was 15 (range 0-32, with higher scores indicating more burden), and 32% had significant depressive symptoms. Patients were on average 79 years old, 60% were female, and most had moderate to severe dementia. The mean number of NPS+/-standard deviation was 4.8+/-2.8. After adjusting for patient characteristics, caregivers who were younger, less educated, more depressed, more burdened, or spent more hours per week giving care reported more NPS in care recipients (all P< or =.005). CONCLUSION: Certain caregiver characteristics are associated with NPS, independent of patient characteristics, including dementia severity. Clinicians should consider the dynamics between patients and caregivers when managing NPS. Understanding how different caregiver characteristics influence NPS may help tailor caregiver education and interventions.     

Unmet desire for caregiver-patient communication and increased caregiver burden

OBJECTIVES: To examine the adequacy of caregiver-patient communication in serious illness and its relationship to caregiver burden. DESIGN: Cross-sectional cohort study. SETTING: Participants' homes. PARTICIPANTS: One hundred ninety-three persons aged 60 and older seriously ill with cancer, congestive heart failure, or chronic obstructive pulmonary disease and their caregivers. MEASUREMENTS: Communication concerns, measured in terms of agreement with statements regarding desire for and difficulty with communication about the patient's illness. Caregiver burden, measured using a 10-item subset of the Zarit Burden Inventory, with scores ranging from 0 to 40 and higher scores indicating greater burden. RESULTS: Of caregivers, 39.9% desired more communication, and 37.3% reported that communication was difficult. Of patients, 20.2% desired more communication, and 22.3% reported that communication was difficult. Disagreement regarding communication concerns was frequent in caregiver-patient pairs; of caregivers who desired more communication, 83.1% of patients did not, and of patients who desired more communication, 66.7% of caregivers did not. Caregivers who desired more communication had significantly higher caregiver burden scores than did caregivers who did not (9.2 vs 4.7, P<.001), even after adjusting for patient's diagnosis, income, and functional status and caregivers' age, sex, and relationship to the patient. CONCLUSION: A large proportion of caregivers and seriously ill older persons had an unmet desire for increased communication, although they frequently disagreed with each other about this desire. Caregivers' desire for increased communication may be a modifiable determinant of caregiver burden.