The buffering effect of a computer support network on caregiver strain

ComputerLink was a computer support network for family caregivers of people with Alzheimer's disease. In a 12-month experiment, 102 caregivers were randomly assigned to an experimental group that had access to ComputerLink or to a control group that did not. This investigation examined whether caregivers in the experimental group had greater reductions in four types of care-related strain by the end of the 1-year study. ComputerLink reduced certain types of strain if caregivers also had larger informal support networks, were spouses, or did not live alone with their care receivers. More frequent use of the communication function was related to significantly reduced strain for caregivers who were initially more stressed and for non-spouse caregivers. Greater use of the information function was related to significantly lower strain among caregivers who lived alone with care receivers. Overall, ComputerLink appeared to be an effective tool for reducing strain for some caregivers.     

Analysis of the reliability of the modified caregiver strain index

OBJECTIVES: The Caregiver Strain Index (CSI) is a 13-item index originally developed in the early 1980s to screen for caregiver strain after hospital discharge of an elderly family member. This study examined the reliability of a modified CSI for applications with contemporary long-term family caregivers. METHODS: As part of a larger family caregiver study using focus groups, telephone interviews, and mailed surveys, test-retest procedures were included to examine the reliability of the Modified CSI. The sample consisted of 158 family caregivers, with an average age of 61 years. Targeted recruitment resulted in participants from diverse racial/ethnic backgrounds. Minority caregivers represented 25% of the sample. RESULTS: The Modified CSI has slightly better internal reliability (alpha =.90) than the original Index, as reported in 1983 (alpha =.86). The two-week test-retest reliability is.88. No prior test-retest data were available for comparison. DISCUSSION: The Modified CSI can be a useful method for detecting strain levels among informal caregivers, and is easily administered and scored. The CSI continues to be a useful measure of caregiver strain for long-term care research and practice.     

Prevalence and impact of caregiving: a detailed comparison between dementia and nondementia caregivers

Analyzing data from more than 1,500 family caregivers from the 1996 National Caregiver Survey, this study documents the ways in which dementia care is different from other types of family caregiving. Not only do dementia caregivers spend significantly more hours per week providing care than nondementia caregivers, they also report greater impacts in terms of employment complications, caregiver strain, mental and physical health problems, time for leisure and other family members, and family conflict. Differential impacts remain even after controlling for intensity of caregiving involvement and sociodemographic factors. Study findings suggest the need to tailor programs and services to the unique challenges faced by dementia caregivers.     

Assessment of behavioral and psychological symptoms of dementia by family caregivers

This study was designed to test the performance and related factors of a self-administered instrument in assessing behavioral and psychological symptoms of dementia (BPSD) by family caregivers. We recruited 173 patients with dementia and major caregivers from two neurological clinics. Information about clinical diagnosis, the Mini Mental State Examination (MMSE), the Clinical Dementia Rating (CDR), the Dementia Behavior Disturbance Inventory (DBDI), and global caregivers’ strain were collected from interview and chart review. We found that DBDI has acceptable construct validity and good internal consistency reliability. BPSD was more frequently found in patients with advanced dementia, poor cognitive function and highly correlated to caregivers’ strain. Multivariate analysis revealed that female patients and caregivers, advanced CDR stages, patient-caregiver relationship, types of dementia and MMSE score were related to the increase of frequency and disturbance index of DBDI. We concluded that BPSD could be evaluated by family caregivers using a self-administered instrument. Further study is indicated to clarify how caregiver characteristics affect the report of behavioral symptoms, and its clinical importance.     

Out-of-hospital death: advance care planning, decedent symptoms, and caregiver burden

OBJECTIVES: To examine the end-of-life experiences of elderly decedents dying out of the hospital and their family caregivers in a state in which the vast majority of Medicare deaths occur in community settings. DESIGN: Telephone survey of family caregivers 2 to 5 months after decedents' deaths. SETTING: Statewide (Oregon) random sample of death certificates. PARTICIPANTS: One thousand one hundred eighty-nine family caregivers of decedents aged 65 and older who died of natural deaths in community settings between 2000 and 2002. MEASUREMENTS: A 69-item telephone questionnaire with single-item indicators and embedded scales that indexed advance directives, use of life-sustaining treatments, hospice enrollment, decedent symptom experience and perceived distress, family financial hardship, out-of-pocket expenses, and caregiver strain. RESULTS: Most decedents had advance directives (78.3%) and were enrolled in hospice (62.4%). Although perceived decedent symptom distress was low overall, certain symptoms (e.g., pain, dyspnea, constipation) were distressing for approximately half of decedents experiencing them. Financial hardship, out-of-pocket expenses, and caregiver strain were frequently reported. American Indian race and younger age were associated with decedent symptom distress. Greater perceived decedent symptom distress, hospice enrollment, more caregiver involvement, and more financial burden were associated with greater caregiver strain. CONCLUSION: Despite high rates of advance directives and hospice enrollment, perceived symptom distress was high for a subset of decedents, and caregiver strain was common. As location of death increasingly shifts nationwide from hospital to community, unmet decedent and family needs require new clinical skills and healthcare policies.     

A family retreat as a comprehensive intervention for children with arthritis and their families

Objective . Family resources and coping skills are important to adaptation to pediatric chronic illness. Psychological and educational interventions have been found to enhance the coping skills of children with juvenile rheumatic disease (JRD) and their families. We examined the efficacy of a 3-day family retreat as a multidisciplinary, comprehensive treatment. Methods . Children with JRD and their caregivers completed questionnaires assessing the children's behavioral and emotional functioning, pain, strain on caregivers' work and leisure activities, and caregivers' psychological distress before and 6 months after the family retreat. Principal caregivers were both parents for 16 children, mothers only for 10 children, and an aunt for 1 child. Results . Improvements were found in children's emotional functioning, strain on caregivers' work, and strain on caregivers' leisure activities. Reductions in reported pain were not consistently revealed. Conclusions . Family retreats are an efficacious, multidisciplinary approach to helping families of children with JRD cope with the disease and its manifestations. Importantly, retreats offer a comprehensive intervention package that might not be available to families on an individual basis.     

Clinical assessment of family caregivers in dementia.

Development of an integrated family assessment inventory based on the Double ABCX and Circumplex models of family functioning and its clinical utility was evaluated with 121 primary family caregivers from a cognitive disorders program. The proposed model predicted a significant proportion of the variance associated with caregiver stress and strain. Several aspects of the caregiving arrangement also emerged as key features in predicting caregiver depression. These findings supported the model's central premise that both dyadic (caregiver-patient) and systemic (caregiver-family) variables are salient in assessing the impact of family caregiving with dementia.     

The stress process of family caregiving in institutional settings

PURPOSE: This study adapts the Stress Process Model (SPM) of family caregiving to examine the predictors of depression in a sample of caregivers (n = 133) with demented relatives residing in suburban skilled nursing facilities. DESIGN AND METHODS: We interviewed family caregivers of family members residing in skilled nursing homes using a variety of measures to assess primary stressors, secondary strain, nursing home stressors, and caregiver depression. We used block-wise regression analyses to determine the predictors of caregiver depression. RESULTS: Results indicated that positive resident adjustment to placement was best predicted by the closeness of the resident-caregiver relationship and nursing home stressors. Caregiver strain, resident adjustment, and nursing home stressors best predicted caregiver adjustment. In turn, the best predictors of caregiver depression included caregiver age, caregiver adjustment to the nursing home, and nursing home stressors. IMPLICATIONS:These results suggest that caregiver depression is closely linked to how well both the resident and caregiver adjust to the nursing home environment. Results also indicate that by broadening the SPM to include stressors common to the nursing home experience, researchers will be able to understand more clearly the specific components of the stress process that may lead to depression in family caregivers of persons living in nursing homes.     

Caring for individuals with dementia and cognitive impairment, not dementia: findings from the aging, demographics, and memory study

OBJECTIVES: To compare the characteristics and outcomes of caregivers of adults with dementia with those of caregivers of adults with cognitive impairment, not dementia (CIND). DESIGN: Cross‐sectional. SETTING: In‐home assessment for cognitive impairment and self‐administered caregiving questionnaire. PARTICIPANTS: One hundred sixty‐nine primary family caregivers of participants in the Aging, Demographics, and Memory Study (ADAMS). ADAMS participants were aged 71 and older drawn from the nationally representative Health and Retirement Study. MEASUREMENTS: Neuropsychological testing, neurological examination, clinical assessment, and medical history were used to assign a diagnosis of normal cognition, CIND, or dementia. Caregiving measures included caregiving time, functional limitations, depressive symptoms, physical and emotional strain, caregiving rewards, caregiver health, and demographic characteristics. RESULTS: Dementia caregivers spent approximately 9 hours per day providing care, compared with 4 hours per day for CIND caregivers (P=.001). Forty‐four percent of dementia caregivers exhibited depressive symptoms, compared with 26.5% of CIND caregivers (P=.03). Physical and emotional strains were similar in both groups of caregivers. Regardless of the strains, nearly all caregivers reported some benefits from providing care. Behavioral problems (P=.01) and difficulty with instrumental activities of daily living (P=.01) in persons with CIND partially explained emotional strain experienced by CIND caregivers. For those with dementia, behavioral problems predicted caregiver emotional strain (P<.001) and depressive symptoms (P=.01). CONCLUSION: Although support services are available to dementia caregivers, CIND caregivers also expend considerable time and experience strains. The real caregiver burden of cognitive impairment in the U.S. population may therefore be greatly underestimated if people who have reached the diagnostic threshold for dementia are focused on exclusively.     

The effects of nursing home placement on family caregivers of patients with Alzheimer's disease.

PURPOSE: This study sought to determine the effects of nursing home placement (NHP) for patients with Alzheimer's disease, compared to maintaining community placement, on changes in family caregiver health and well-being over time. DESIGN AND METHODS: We utilized a 2-year, longitudinal study with one baseline and four follow-up assessments for patients' spouses, adult offspring, and in-laws (married to offspring). Families were recruited from eight clinical outpatient centers, supported by the State of California, and followed in the community over time. A multidisciplinary clinical evaluation was undertaken by the centers, and follow-up assessments included questionnaire and interview data. RESULTS: Family caregiver health and well-being did not improve over time following NHP, and there were no significant differences in health and well-being between family caregivers who placed their ill elder in a nursing home and those who kept the elder at home or in the community. However, female family caregivers and spouses displayed greater declines in health and well-being over time, compared to other family caregivers, regardless of whether or not NHP occurred. IMPLICATIONS: Families considering NHP need to be advised of what may and may not change following NHP. In particular, spouses and female family caregivers may not experience those changes in life satisfaction and well-being that are hoped for. Variation in the effects of NHP may be more related to pre-NHP family processes and relationships than to the severity of the patient's disability, caregiver strain, patient and caregiver demographics, and use of community-based professional services.     

Care-related stress. A comparison of spouse and adult-child caregivers in shared and separate households.

This research examines the role that relationship and household arrangement have in explaining the levels of care-related stress effects experienced by spouse and adult-child caregivers in shared and separate residences. Data from 180 spouse and adult-child caregivers were analyzed to identify differences in caregiver health decline, relationship strain, and activity restriction across these settings when the effects of elder impairment, caregiver age, and use of social supports are controlled. Results show that spouse and adult children in shared households experience similar levels of care-related strain. However, comparison of adult children in shared and separate households show considerable cross-setting differences in strain, with those in shared households having significantly greater activity restriction but less relationship strain. These findings have implications for the delivery of social services, specifically for targeting health monitoring, respite, and family counseling services.     

Caregiving for Older Adults Requiring Hemodialysis: A Comparison Study

This study examined differences in caregiving appraisal between primary family caregivers of disabled older adults receiving hemodialysis (PFCGs‐wHD) and disabled older adults not receiving dialysis (PFCGs‐woD). A total of 242 PFCGs‐wHD and 335 PFCGs‐woD were included in the analyses. We used adjustment by propensity score to control for bias by confounding factors. Caregiving appraisal was measured in terms of role strain, emotional exhaustion, and caregiving satisfaction. On the first task, PFCGs‐wHD demonstrated significantly worse levels on all three appraisal indicators than did PFCGs‐woD. On the second task, only higher emotional exhaustion was significantly mediated by higher role strain in PFCGs‐wHD. Further, PFCGs‐wHD status directly influenced lower caregiving satisfaction without mediation by higher role strain. Caregiving for disabled older adults receiving HD may be associated with significant challenges for caregivers.     

The Cleveland Alzheimer's managed care demonstration: outcomes after 12 months of implementation

PURPOSE: This demonstration evaluates the effects of integrating Alzheimer's Association care consultation service with health care services offered by a large managed care system. The primary hypothesis is that Association care consultation will decrease service utilization, increase satisfaction with managed care, and decrease caregiver depression and care-related strain. Secondary modifying-effects hypotheses posit that the effects of the intervention will be intensified when patients have not received a firm dementia diagnosis, patients have more severe memory problems, caregivers use other Association services in tandem with care consultation, and caregivers are not patients' spouses. DESIGN AND METHODS: The demonstration is a randomized trial that examines outcomes after a 12-month study period. Interview data from 157 primary family caregivers are combined with data abstracted from medical/administrative records. RESULTS: Support for the primary hypothesis is found for selected, but not all, service utilization outcomes and for caregiver depression. Support for secondary modifying-effects hypotheses is found for satisfaction outcomes and care-related strain outcomes. IMPLICATIONS: Care consultation delivered within a partnership between a managed care health system and an Alzheimer's Association is a promising strategy for improving selected outcomes for patients with dementia and their caregivers.     

The transition from caregiving to bereavement: the relationship of care-related strain and adjustment to death

This study examines two competing hypotheses about the relationship between care-related strain and the difficulty adjusting to the impaired relative's death. One hypothesis, and the limited available empirical evidence, suggests that family members who perceive caregiving as stressful will experience some relief when their relative dies because care responsibilities end. An alternative hypothesis, derived from several conceptualizations, posits the opposite relationship, with greater care-related strain predictive of greater strain during bereavement. Panel data from spouse and adult-child caregivers collected before and after the death support the second hypothesis. Respondents who appraise caregiving as more difficult and those who report more negative caregiving consequences for the family assess bereavement as more difficult and report greater bereavement strain for the family.     

Dyadic relationship scale: a measure of the impact of the provision and receipt of family care

PURPOSE: This study evaluated the psychometric properties of the Dyadic Relationship Scale (DRS), which measures negative and positive dyadic interactions from the perspective of both the patient and the family caregiver. An important aspect of evaluating the DRS was that it be statistically sound and meaningful for both members of the dyad. DESIGN AND METHODS: The study used a cross-sectional design. Survey packages were mailed to home health care patients and their family caregivers. The unit of analysis was the dyad, and exploratory and confirmatory factor analyses were conducted. We examined the reliability, discriminant, and concurrent validities of the instrument. RESULTS: The data supported a two-factor DRS that included negative dyadic strain (patient alpha =.84; caregiver alpha =.89) and positive dyadic interaction (patient alpha =.86; caregiver alpha =.85). The analysis supported the DRS's construct, discriminant, and concurrent validity, as well as its reliability for both patients and family caregivers. IMPLICATIONS: Using the DRS to measure the impact of family care on positive and negative interactions inclusive of patients and caregivers can assist in identifying areas of difficulty and guide interventions to improve outcomes for both members of the dyad.     

Urinary incontinence – The family caregivers’ perspective

Urinary incontinence can be expected to present an issue in domestic care with various conditions and ways of dealing with the situation. This pilot study investigates the kinds of coping strategies developed by family caregivers of urinary incontinent persons. Therefore, it seeks to explore how family caregivers experience and shape everyday life with an incontinent family member.Based on a qualitative design, problem-centered interviews were carried out with 10 family caregivers (4 men, 6 women) and analyzed according to Grounded Theory.The results show that family caregivers place major emphasis on maintaining continence, which is conceived as an expression of concern for the care-dependent person. The data facilitated the development of four major concepts: incontinence as a cause of dependency, feelings of shame, striving for continence and coping with incontinence. These concepts indicate that family caregivers look for strategies to provide the incontinent family member with the opportunity of (self-) controlled excretion. Yet this kind of support is linked to feelings of shame on both parts.     

Urinary incontinence: a treatise on gender, sexuality, and culture

Attitudes toward older adults with incontinence vary significantly between societies and cultures. Intangible consequences arising from such attitudes may exert enormous psychosocial strain on affected older adults, caregivers, family members, and social networks.Health providers should consider psychologic, gender based,and sociocultural differences in formulating efficient screening and therapeutic strategies for older adults who have UI.     

Development of the family caregiver medication administration hassles scale

PURPOSE: "Medication administration hassles" are the minor daily irritants that family caregivers experience when they assist a dependent family member with medication regimens. This study was designed to develop and test a multidimensional measure of the hassles in family caregiver medication administration. DESIGN AND METHOD: The authors employed a multiphase process (caregiver focus groups, instrument development, pilot testing, and field testing). Approximately 180 family caregivers representing diverse socioeconomic circumstances and racial or ethnic backgrounds participated in the study. The final version of the instrument consists of 24 items and four subscales: Information Seeking/Information Sharing (9 items, alpha =.92), Safety Issues (5 items, alpha =.83), Scheduling Logistics (7 items, alpha =.90), and Polypharmacy (3 items, alpha =.80). Overall scale reliability is.95, and test-retest reliability at 2 weeks is.84. IMPLICATIONS: Caregiver medication administration hassles represent a complex, multidimensional construct that warrants consideration in studies of contemporary family caregiver stress, strain, and burden.     

The relationship between mastery and depression among Japanese family caregivers

The present study examined the relationship between caregiver mastery and depressive symptoms among family stroke caregivers in western Japan (N = 100). Family caregivers were identified from a sample of rehabilitation hospitals; participation rate was 100 percent for all eligible caregivers. Caregivers with high mastery were found to have significantly fewer depressive symptoms than low mastery caregivers and were significantly more likely to use a respite caregiver. They also reported significantly less burden, yet paradoxically were significantly more likely to rate their care-recipients as more functionally dependent on them. Caregiver age, health status, and caregiving duration did not relate to mastery. However, men had a significantly higher sense of mastery. In general, findings parallel those for Western family caregivers, although mean mastery scores for Japanese caregivers were lower than those reported for American family caregivers.     

Families of elderly stroke patients. Effects of home care

Elderly stroke patients and their families were studied to determine the health effects of providing home care on family caregivers, whether or not caregivers actually providing care in the home experience different effects than caregivers whose family members live in nursing homes, and factors associated with any observed deleterious effects of caregiving. One hundred forty-seven stroke patients were eligible for study. Of these, 101 were available for follow-up; 89 family caregivers were interviewed (88%). Caregivers reported both positive and negative effects of providing home care. When actual home caregivers were compared with potential caregivers (those with family members in institutions), no differences in effects were seen. The relationship between each of three health effects (general, social, and emotional) and patient and caregiver attributes was explored. No factors were found to be related to poorer perceived general health. Dependent patient functional status and additional life stress were both associated with diminished social activity and emotional ill-health. In the latter instance, insufficient social activity and help from family were additional risk factors. If policy is going to advocate home care, its consequences for family caregivers must be known.