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.     

Correlates of physical health of informal caregivers: a meta-analysis

Effects of caregiving on physical health have received less theoretical and empirical attention than effects on psychological health. This meta-analysis integrates results from 176 studies on correlates of caregiver physical health. Caregiver depressive symptoms had stronger associations with physical health than did objective stressors. Higher levels of care recipient behavior problems were more consistently related to poor caregiver health than were care receiver impairment and intensity of caregiving. Higher age, lower socioeconomic status, and lower levels of informal support were related to poorer health. Predictors of physical health are not identical to predictors of psychological health. Associations of caregiving stressors with health were stronger among older samples, dementia caregivers, and men. In sum, negative effects of caregiving on physical health are most likely to be found in psychologically distressed caregivers facing dementia-related stressors.     

Caregiver burden among Japanese informal caregivers of cognitively impaired elderly in community settings

Because dementia is a progressive disease, formal long-term care providers and care managers need information on how the severity of cognitive impairment affects caregiver burden in order to better assist family caregivers. However, research to guide care providers in behavioral symptom-management is not well developed. The purpose of this study was to examine the relationship between dementia status and burden of family caregivers. The subjects were 1875 community-dwelling elderly eligible for public long-term care insurance. The data we used in this analysis included the caregivers’ and dependents’ characteristics. The main outcome was subjective caregiver burden assessed by the Japanese version of the Zarit Burden Interview (J-ZBI). A total of 1559 pairs of dependents and caregivers were included in the analysis. The pairs were sorted into three mutually exclusive categories: no dementia, mild dementia, and severe dementia. Two hundred sixty-one dependents had severe dementia, and 725 had mild dementia. Although differences were found among the dementia categories in levels of caregiver burden according to the J-ZBI before and after adjusting for these baseline variables, the odds ratios equal nearly 1. The present study shows that severity of dementia is not associated with caregiver burden in Japan.     

Information and referral service usage among caregivers for dementia patients

Questionnaires were mailed to 257 callers of a toll-free telephone "helpline" specializing in Alzheimer's disease and related dementing illnesses; 125 (48.6%) were completed and returned. On the average, 3.94 requests for information were made per call. The most common requests concerned services delivered to the home, general information about dementia, information about adult day care, and support group information. Results indicated that a telephone-based information and referral helpline is useful in disseminating knowledge about resources to caregivers of older community-residing adults with cognitive impairment.     

Husbands and wives as caregivers: antecedents of depression and burden

Contrasting predictors of depression among 101 men and 214 women providing care to spouses suffering from Alzheimer's Disease indicated that the sole predictor for husbands was ill health, whereas for wives less emotional investment was also predictive. While there were no significant predictors for burden among husbands, for wives, burden was associated with poorer health, less emotional investment, greater spouse impairment, and provision of more assistance with tasks.     

A review of programs to alleviate the burden of informal caregivers of dependent persons

The review of interventions currently available to alleviate the burden of informal caregivers of dependent persons has both social and political relevance considering the increasing number of elderly dependent persons. Respite services and programs for psycho-social intervention are the main methods of dealing with this burden. Study of the main research carried out to date on such interventions enables us to organize more efficient services, especially considering the enactment of the Law on Dependence in Spain in January 2007 and the need for other European and international governments to establish systems to meet the needs of the growing dependent population.     

Burden of caregiving: evidence of objective burden, subjective burden, and quality of life impacts on informal caregivers of patients with rheumatoid arthritis

OBJECTIVE: To improve understanding of the nature and magnitude of the burden of informal care and also to indicate important areas for improving the current ways in which informal care is investigated. METHODS: Information on objective burden (such as care tasks performed and time investment), subjective burden (using the Caregiver Reaction Assessment instrument and a self-rated burden score), and quality of life (using the EuroQoL instrument) were collected in a postal questionnaire of 153 informal caregivers who provide care for rheumatoid arthritis (RA) patients. RESULTS: Caregivers had been caring for the RA patients on average for >11 years, reflecting the chronic nature of RA. They provide a substantial amount of care (27.4 hours per week) and are moderately strained (24.6 on the self-rated burden scale). Caregivers are relatively healthy on average but caregivers of more severe RA patients are relatively unhealthy, which may indicate health losses due to caregiving. CONCLUSION: Informal care can be burdensome in the context of RA. More information may help assist informal caregivers in caring for RA patients and help to avoid health problems and high subjective burden.     

Care burden and self-reported health status of informal women caregivers of HIV/AIDS patients in Kinshasa, Democratic Republic of Congo

We conducted a cross-sectional study on women who were caregivers of HIV/AIDS-affected spouses in Bumbu in Kinshasa, Democratic Republic of Congo. The sample consisted of 80 women randomly selected from a client visitation list of the home-based care program for AIDS patients. A semi-structured questionnaire was applied. A self-reported health status was calculated with five items from the questionnaire. The self-reported health status score of participants indicated poor health. The study highlights the great burden on caregivers in sub-Saharan Africa.     

Easing the burden of caregiving: the impact of consumer direction on primary informal caregivers in Arkansas

PURPOSE: We assess the effect of consumer-directed care on the emotional, physical, and financial well-being of the primary informal caregivers of the Medicaid beneficiaries who voluntarily joined Arkansas's Cash and Counseling demonstration. DESIGN AND METHODS: The demonstration randomly assigned beneficiaries to a program in which they could direct their own disability-related supportive services (the treatment group) or rely on traditional agency services (the control group). We constructed outcome measures from telephone interviews with 1,433 caregivers who provided beneficiaries with the most unpaid assistance at baseline, and we used multivariate regression models to estimate program effects. Interviews occurred between February 2000 and April 2002, 10 months after beneficiaries' random assignment. RESULTS: At follow-up, treatment group caregivers provided fewer hours of assistance than did their control group counterparts, on average, and they reported better emotional, physical, and financial well-being. IMPLICATIONS: Permitting interested Medicaid beneficiaries to direct their own in-home supportive services reduces burden on informal caregivers, which may help reduce beneficiaries' nursing home use.     

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.     

When home care ends--changes in the physical health of informal caregivers caring for dementia patients: a longitudinal study

OBJECTIVES: To verify the change in health variables and parameters of health service utilization in a group of active caregivers for older persons with dementia in comparison with former caregivers who had ceased to provide home care for at least 6 months (death of the patient or institutionalized care). DESIGN: A prospective longitudinal study with 1-year follow-up. Active and former caregiver groups originated from a sample of active caregivers at baseline. SETTING: Participants were recruited mainly via advertisements placed in two magazines with large, nationwide circulation. The questionnaires were sent on request. PARTICIPANTS: Seven hundred twenty primary caregivers of dementia patients living in the community. All patients had a medical diagnosis of dementia and had a score of 20 or greater on the mental-mnestic disturbances factor of the Sandoz Clinical Assessment--Geriatric scale. Their care needs covered at least one of four activities of daily living (personal hygiene, eating, toilet use/excretion, mobility). After 12 months, 681 caregivers were reinterviewed. MEASUREMENTS: The physical complaints were assessed with the 24-item Giessen Symptom List (subscales: aching limbs, stomach complaints, heart complaints, physical exhaustion). Other key variables were the number of illnesses, number of somatic and psychotropic medications, and number of physician visits. RESULTS: Although the somatic symptoms of the active caregivers (n = 427) remained stable at a high level, they decreased significantly (24%) in the group of former caregivers (n = 121). Simultaneously, the number of visits former caregivers made to physicians almost doubled. The reason why home care was terminated (death or institutionalization) did not influence health variables or health service utilization. CONCLUSION: The physical health of former caregivers improves in the long term once they cease to provide home care. The fact that former caregivers go to the doctor much more frequently is to be interpreted as an indication that they take the time to attend to their own physical and medical needs.     

Improving the long-term care referral process: insights from patients and caregivers

Large increases in the need for long-term care (LTC) services are expected as baby boomers age. Little has been published about patient and caregiver preferences for information about LTC. However, our qualitative research findings suggest that potential consumers may find it difficult to obtain accurate and timely information about LTC programs and services. In-person, semistructured interviews were conducted with 47 subjects, including patients (n = 25) within 90 days of their referral to a LTC placement (including NH, assisted living, home care, and community) and their caregivers (n = 22). Interview questions addressed the events that seemed to trigger their need for a LTC referral, the resources they used to become more informed about LTC options and the issues they confronted with the LTC referral process. Qualitative analyses identified a number of patient and informal caregiver-reported barriers to making decisions about LTC services, including insufficient information about LTC programs and community resources, unclear funding requirements and inadequate funding, and difficulty knowing how to plan for LTC or make LTC decisions. A potential solution may be an online LTC Guide designed to provide accurate information about the range of LTC services, with an emphasis on home and community-based services. This Guide was developed to address the gap in comprehensive LTC information identified in the findings of this study.     

End-of-life care: findings from a national survey of informal caregivers

BACKGROUND: Family and friends are thought to be the predominant providers of end-of-life care, although nationally representative data on this topic have been lacking. METHODS: This study draws from the 1999 National Long-Term Care Survey and its Informal Caregivers Survey to characterize primary informal caregivers' experiences providing end-of-life care to chronically disabled community-dwelling older adults. Study participants were 1149 primary informal caregivers, stratified by care recipients' survival or death during the following 12 months. RESULTS: An estimated 11.2% of the chronically disabled community-dwelling older adults died within 1 year of being interviewed. Among persons who died, 72.3% were receiving help from an informal caregiver at the time of the interview. End-of-life primary informal caregivers helped an average of 43 hours per week, 84.4% provided daily assistance, and caregiver support services were infrequently used (ie, respite care and support groups were used by less than 5% of caregivers). While end-of-life caregivers reported significant emotional (28.9%), physical (18.4%), and financial (14.0%) strains, more than two thirds endorsed personal rewards related to their helping role. Compared with primary informal caregivers of persons who survived the following 12 months, end-of-life caregivers provided significantly higher levels of assistance and reported more challenges and strains, but they were no less likely to endorse rewards related to their helping role. CONCLUSIONS: End-of-life caregivers provide frequent and intense assistance with few supportive services. These data underscore the relevance of families to end-of-life care, and the potential benefit of better integrating families in patient care.