Dementia Caregivers' Use of Services for Themselves.

PURPOSE OF THE STUDY: Health care and social services such as physician visits and support groups used by dementia caregivers for themselves were examined. Caregivers (N = 642) were from the Resources for Enhancing Alzheimer's Caregivers Health (REACH II) study. DESIGN AND METHODS: Caregiver predisposing, enabling, and need variables were examined using chi-squared and t-tests to characterize service users. Stagewise linear regression was used to explain numbers of services used. RESULTS: Predisposing, enabling, and need variables were significantly related to dementia caregivers' service use. In regression, caregivers who were older, more educated, married, not employed, depressed, with functional disability needs, more illness-related reduced activity days, more medications, more symptoms, and fewer hours on duty per day used significantly more services for themselves. The statistically significant model explained 22.2% variance in numbers of services used. Service users, compared with nonusers, evidenced greater burden, bother with behaviors, and more desire to institutionalize. IMPLICATIONS: This study shows that caregiver service use is related to caregiver characteristics. Future work should examine the impact of caregiving on health care and social service use and costs. The societal costs of caregiving may be better understood when we account for additional service use by caregivers themselves. A significant clinical and policy issue is who should assess and support the caregiver. Possibilities include the care recipient's health care practitioner, the caregiver's health care practitioner, or a formal caregiver-focused program based in the health care system or the social service network.

REACH VA: Moving from Translation to System Implementation.

PURPOSE OF THE STUDY: Resources for Enhancing All Caregivers Health in the Department of Veterans Affairs (REACH VA) has been implemented in the VA system as a national program for caregivers. DESIGN AND METHODS: We describe the trajectory of REACH VA from national randomized clinical trial through translation to national implementation. The implementation is examined through the six stages of the Fixsen and Blasé implementation process model: exploration and adoption, program installation, initial implementation, full operation, innovation, and sustainability. Different drivers that move the implementation process forward are important at each stage, including staff selection, staff training, consultation and coaching, staff evaluation, administrative support, program evaluation/fidelity, and systems interventions. RESULTS: Caregivers in the REACH VA 4 session intervention currently implemented in the VA had similar outcomes to longer REACH interventions, including Resources for Enhancing Alzheimer's Caregivers Health (REACH II). Caregivers experienced significant decreases in burden, depression, anxiety, number of troubling patient behaviors reported, caregiving frustrations, stress symptoms (feeling overwhelmed, feeling like crying, being frustrated as a result of caregiving, being lonely), and general stress. Effect sizes (Cohen's d) for these significant variables were between small and medium ranging from .24 to .46. IMPLICATIONS: The implementation of REACH VA provides a road map for implementation of other behavioral interventions in health care delivery settings. Lessons learned include the importance of implementing a proven, needed intervention, support from both leadership and clinical staff, willingness to respond to staff and organization needs and modify the intervention while preserving its integrity, and fitting the intervention into ongoing routines and practices.

Smoking and Smoking Increase in Caregivers of Alzheimer's Patients.

PURPOSE OF THE STUDY: The relationship between stress and smoking has been established, but there is little research on the effects of stress and coping on smoking in caregivers of Alzheimer's disease patients. This study examines how caregiver stressors and coping resources explain smoking status and recent smoking increase. DESIGN AND METHODS: Data were obtained from the Resources for Enhancing Alzheimer's Caregivers Health (REACH II) study. Analyses identified differences between caregiver smokers and nonsmokers and between caregiver smokers who reported a recent smoking increase and those who did not. Variables that were significantly different between the groups were examined in two logistic regression analyses to explain smoking status and smoking increase. RESULTS: Of 642 caregivers, nearly 40% reported smoking and 25% of smokers reported recent increase in smoking. Younger caregivers were more likely to report smoking. Explanatory variables for smoking increase were being Caucasian or African-American, higher depression scores, and less caregiving skills. IMPLICATIONS: This study demonstrates that smoking among caregivers is a valid public health concern. Further investigation of ways that explanatory variables affect smoking status and increase in caregivers, and incorporation of smoking cessation strategies that address depression and low caregiving skills, seem warranted in future caregiver interventions.

Easing reintegration: telephone support groups for spouses of returning Iraq and Afghanistan service members.

Spouses of returning Iraq (Operation Iraqi Freedom, OIF) and Afghanistan (Operation Enduring Freedom, OEF) military service members report increased depression and anxiety post deployment as they work to reintegrate the family and service member. Reconnecting the family, renegotiating roles that have shifted, reestablishing communication patterns, and dealing with mental health concerns are all tasks that spouses must undertake as part of reintegration. We tested telephone support groups focusing on helping spouses with these basic reintegration tasks. Year-long telephone support groups focused on education, skills building (communication skills, problem solving training, cognitive behavioral techniques, stress management), and support. Spouse depression and anxiety were decreased and perceived social support was increased during the course of the study. In subgroup analyses, spouses with husbands whose injuries caused care difficulties had a positive response to the intervention. However, they were more likely to be depressed, be anxious, and have less social support compared to participants who had husbands who had no injury or whose injury did not cause care difficulty. Study findings suggest that this well-established, high-access intervention can help improve quality of life for military spouses who are struggling with reintegration of the service member and family.

A trial of dementia caregiver telephone support.

The purpose of this study was to determine if telephone support groups for dementia caregivers have an effect on bother with patient behaviours, burden, depression, and general well-being. The randomized controlled trial compared telephone support groups (15 groups of 5 or 6 caregivers) with control groups (print materials). Groups met 14 times over 1 year. The 1-hour sessions included content on education, coping skills, and support. Data were collected at baseline and at 6 and 12 months. The sample comprised 154 caregivers, 77 per arm, providing care to veterans with dementia or a veteran caregiver. Bother was found to differ significantly at baseline. There were no significant treatment effect differences between study arms. Participants anecdotally reported improvement. It was concluded that telephone support groups are an efficient way to interact with caregivers. Further research should test different models of care. Interventions that are targeted to specific needs or occur frequently may provide better support for caregivers of individuals with a worsening condition.

Potential explanations for control group benefit.

BACKGROUND: Estimating effectiveness of clinical interventions depends on detecting differences between the responses of intervention and control groups. The outcome, intervention, and moderating factors all may influence the between group change. The absence of a clinically or statistically meaningful difference may also result from control group improvement due to nonspecific factors such as participants' perception of attention, positive regard, expectations, desire to please, and therapeutic alliance with the care provider. PURPOSE: We examined perceived benefit and sources of benefit for control caregivers who participated in the CONNECT randomized controlled trial of a dementia caregiving intervention. METHODS: After the final scheduled data collection in CONNECT, control group participants were asked whether they believed they benefited from study participation. Those who reported benefit were asked to describe the benefit received. Data were analyzed qualitatively. RESULTS: Of 60 available control caregivers, 82% reported a perceived benefit from study participation in five areas: getting information about dementia and caregiving; having someone to talk to and feeling supported; receiving understanding and validation of feelings; knowledge that others were in similar situations; and perceived appreciation of own abilities. Control caregivers who reported benefit were less burdened and depressed and spent less time on duty at baseline than those who did not report benefit. From caregivers' responses, we have identified the assessment battery, both content and time spent in data collection, as a possible mechanism of action for benefit. LIMITATIONS: Study limitations include the better baseline characteristics of the control caregivers who reported benefit, the sample size of benefit control caregivers, the possibility of perceptions of benefit being a function of social desirability, and the lack of a similar question about benefit being asked of intervention caregivers. CONCLUSIONS: These findings suggest that the outcome assessment questionnaires used in this and similar trials may be an intervention of sorts for caregiver participants in the control group. Caregivers who are less distressed may benefit more from the attention provided during assessment. These findings underscore the importance of asking caregivers how they are doing. For researchers, there is a need to develop innovative ways to assess outcomes to avoid unintended benefit of assessments.

Anxiety, social support, and physical health in a sample of spouses of OEF/OIF service members.

The goal of this study was to examine the relationships between heightened anxiety, social support, and physical health in a sample of spouses of returning Iraq and Afghanistan service members. 86 spouses were recruited nationally as part of a pilot trial of a military spouse telephone support group. Participants completed measures of physical and mental health via telephone including a screening tool for generalized anxiety disorder (GAD). Scores for social support and health outcomes were compared across two groups (positive vs. negative screens for GAD) using one-way analysis of variance analysis procedures. Path analytic techniques were used to evaluate the relative effects of anxiety and perceived social support on overall health and physical health comorbidities. A total of 38 participants screened positive for GAD. Participants with probable GAD reported having less social support than those screening negative for GAD. GAD participants also reported poorer overall health and more physical health comorbidities than their GAD-negative counterparts. Path analysis indicated that heightened anxiety is associated with worse overall health and social support does not buffer this interaction. The results suggest that anxiety-related health is a critical factor to be addressed in spouses of service members.

Typical and atypical dementia family caregivers: systematic and objective comparisons.

This systematic, objective comparison of typical (spouse, children) and atypical (in-law, sibling, nephew/niece, grandchild) dementia family caregivers examined demographic, caregiving and clinical variables. Analysis was of 1476 caregivers, of whom 125 were atypical, from the Resources for Enhancing Alzheimer's Caregivers Health (REACH I and II) studies. Based on statistical and clinical significance, there were large effects for demographics but no large effects among caregivers or care recipients on clinical and caregiving variables. Non-spouse family members were more likely to be caring for women and unmarried individuals. Grandchildren and nieces/nephews provided care for older care recipients. For care recipients who are unmarried, older, or women, fewer care possibilities may be available; consequently family members other than spouse or children may become their caregivers. Once an individual becomes a caregiver, the clinical experience of dementia caregiving is similar across caregiver types. These findings have implications for clinical care and public policy.

Translation of a dementia caregiver support program in a health care system--REACH VA.

BACKGROUND: Based on the National Institute on Aging/National Institute of Nursing Research Resources for Enhancing Alzheimer's Caregiver Health (REACH) randomized controlled trial (REACH II), REACH VA (Department of Veterans Affairs) was the first national clinical translation of a proven behavioral intervention for dementia caregivers, running from September 2007 through August 2009. This article describes the population and outcomes of the REACH VA translation of REACH II into the VA. METHODS: Clinical staff members from 24 VA Medical Center Home-Based Primary Care programs in 15 states delivered the intervention to stressed caregivers of patients with dementia. Like REACH II, the 6-month REACH VA intervention, structured through a protocol and individualized through a risk assessment, targeted education, support, and skills training to address caregiving risk areas of safety, social support, problem behaviors, depression, and health through 12 individual in-home and telephone sessions and 5 telephone support group sessions. Staff members of the Memphis VA Medical Center, Memphis, Tennessee, collected data on burden, depression, health and healthy behaviors, caregiving frustrations, social support, dementia-related behaviors, and time spent providing care and on duty. RESULTS: From baseline to 6 months, caregivers reported significantly decreased burden, depression, impact of depression on daily life, caregiving frustrations, and number of troubling dementia-related behaviors. A 2-hour decrease in hours per day on duty approached significance. Caregivers (96%) believed that the program should be provided by the VA to caregivers. CONCLUSIONS: This clinical translation achieved outcomes similar to the REACH II randomized controlled trial, providing clinically significant benefits for caregivers of a veteran with a progressive dementing disease. This model of caregiver support can inform public policy in providing assistance to caregivers.

The cost-effectiveness of a behavior intervention with caregivers of patients with Alzheimer's disease.

OBJECTIVES: To examine the cost-effectiveness of a randomized, clinical trial of a home-based intervention for caregivers of people with dementia. DESIGN: This cost-effectiveness analysis examined Resources for Enhancing Alzheimer's Caregivers Health (REACH II), a multisite, randomized, clinical trial, from June 2002 through December 2004, funded by the National Institute on Aging and the National Institute of Nursing Research, of a behavioral intervention to decrease caregivers' stress and improve management of care recipient behavioral problems. SETTING: Community-dwelling dementia caregiving dyads from the Memphis REACH II site. PARTICIPANTS: Of Memphis' random sample of 55 intervention and 57 control black and white dyads, 46 in each arm completed without death or discontinuation. Family caregivers were aged 21 and older, lived with the care recipient, and had provided 4 or more hours of care per day for 6 months or longer. Care recipients were cognitively and functionally impaired. INTERVENTION(S): Twelve individual sessions (9 home sessions and 3 telephone sessions) supplemented by five telephone support-group sessions. Control caregivers received two "check in" phone calls. MEASUREMENTS: Incremental cost-effectiveness ratio (ICER), the additional cost to bring about one additional unit of benefit (hours per day of providing care). RESULTS: At 6 months, there was a significant difference between intervention caregivers and control caregivers in hours providing care (P=.01). The ICER showed that intervention caregivers had 1 extra hour per day not spent in caregiving, at a cost of $5 per day. CONCLUSION: The intervention provided that most scarce of caregiver commodities--time. The emotional and physical costs of dementia caregiving are enormous, and this intervention was able to alleviate some of that cost.

Differences of self-reported osteoarthritis disability and race.

BACKGROUND: Differences in self-reported disability may be found for older black and white adults with knee osteoarthritis (OA). METHODS: This secondary analysis of data from a randomized single-blind clinical trial examined race differences in the relationship between self-reports and timed performance tests of walking. Study participants were 518 older adults (131 blacks, 387 whites), including 363 women and 155 men, with an average age of 68.6 years. RESULTS: Older black and white adults with radiographically documented knee OA reported equivalent functional ability and pain severity. However, both blacks' OA severity rating and tested performance were significantly worse than those of whites. Self-report and tested walking performance were significantly less correlated among black older adults than among white older adults. Analyses of potential confounding variables documented that the difference was not due to marital status, gender, education, income, body mass index, comorbidity, pain level, OA severity or general health. CONCLUSIONS: Self-reports of OA disability were less related to tested performance for walking among black older adults. Clinicians' knowledge of black patients' underestimation of their disability has compelling potential for improving clinical treatment and enhancing diagnostic approaches to care of older adults.

Cognitive abilities of Alzheimer's patients: perceptions of Black and White caregivers.

This study compared Black (n = 97) and White (n = 143) family caregivers regarding the relationship between subjective and objective cognitive assessments of Alzheimer's patients from the Memphis site of the NIA/NINR Resources for Enhancing Alzheimer's Caregivers Health (REACH) randomized clinical trial. Black and White caregivers' subjective ratings (Pearlin Cognitive Status Scale) of their care recipients' cognitive abilities were equivalent, but White Alzheimer's patients had higher objective cognitive performance (Mini-Mental State Examination). In simple regression analysis, race was significantly related to differences between subjective and objective cognitive assessments and remained so when caregiver age, sex, income, education, relationship to care recipient, caregiver bother (burden), and care recipient sex were statistically controlled in multiple regression analysis. Compared to the other group, Black caregivers generally overrated, and White caregivers underrated, their care recipient's cognitive ability. This difference in caregiver's appraisal may affect clinical and behavioral interventions for dementia patients and their caregivers.

Burnout and psychological stress among deans of colleges of medicine: a national study.

Psychological burnout may inhibit the ability of deans of colleges of medicine to effectively lead their organizations during periods of rapid change. The objective of this study was measure the prevalence and intensity of the psychological components of burnout and their correlates among deans of U.S. colleges of medicine. To do so, questionnaires that burnout, job stressors, personal support systems and job satisfaction were sent to deans of all U.S. colleges of medicine, and selected deans of nursing schools, and other academic health center leaders. Medical school deans exhibited a high prevalence of depersonalization (42.9% of respondents), emotional exhaustion (25.4%), and reduced personal accomplishment (27.0%). High levels of these subdomains and of overall burnout intensity significantly correlated with high levels of personal, job, and environmental stress; low levels of support or coping resources; high prevalence of physical and behavioral symptoms; and reduced job satisfaction. Deans of colleges of medicine frequently exhibit characteristics of burnout that may impede effective leadership. These characteristics are likely to intensify unless specific interventions are devised and implemented.

Diabetic patient experiences in a Medicaid managed care system.

OBJECTIVE: When Tennessee received a federal waiver to place all Medicaid enrollees in managed care organizations (MCOs), patients with chronic conditions such as diabetes were deemed especially vulnerable. This survey assessed patients' perceptions of diabetic care, self-care procedures, and satisfaction with medical care before and after enrollment in a Medicaid MCO. METHODS: A telephone survey was designed and pilot tested before surveying 57 patients meeting inclusion criteria of continuous enrollment in Medicaid for two years before, and in the MCO for two years after, the initiation of Tennessee's Medicaid managed care system (TennCare). RESULTS: On average, patients were 56.1 +/- 8.9 years old (mean +/- SD), African American (87.7%), female (73.7%), disabled (64.8%), with 8.4 +/- 2.8 years of education and annual incomes below $10,000 (54.4%). Mean age at diagnosis was 39.5 +/- 11.5 years, and most (75.5%) were currently prescribed insulin. Over one-third (39.6%) described the quality of healthcare received under managed care as excellent or very good and 38.9% felt prior Medicaid care was worse or much worse. Compared to Medicaid, patients reported no difference in being denied a test under managed care because of lack of approval (P = .754). However, significant improvements were reported in receiving detailed information about diabetes (89.5% vs. 73.7%, P = .022), and diet (89.5% vs. 77.2%, P = .039) for the TennCare period. Patients were more likely to perform finger stick blood glucose tests under the MCO (76.8% vs. 40.7%, P = .001), but did not report that blood glucose was controlled more of the time (P = .332). CONCLUSION: Most patients were satisfied with their MCO care, and most reported that finger stick glucose monitoring increased under the MCO. However, no significant gains in controlling blood sugar were reported. From the perspective of most patients, enrollment in an MCO had positive outcomes and resulted in improved access to diabetes-related health information.

Factors that influence the medication decision making of persons with HIV/AIDS: a taxonomic exploration.

It is well known that patients often alter their medication regimens and that these changes may have profound consequences for their health outcomes. Not so well known are the factors that influence the medication decision making of persons managing their own treatment in their day-to-day home situations. In this study, persons living with HIV/AIDS (PLWH) were asked about factors that affected the taking of their medications. Using semistructured interviews in this study of 57 PLWH, the authors used intensive analysis of the narratives to create taxonomies of the barriers and facilitators to taking HIV medications and the decisions that were involved. Categories of identified facilitators included motivation, factors of faith, routines, and others' influences. Categories of identified barriers included perceptions, psycho-emotional issues, provider/clinic issues, interpersonal factors, and disease and treatment factors. This study showed medication decision making to be a complex process, influenced by often-competing life and treatment issues and affected by participants' beliefs and values. These findings call for research into the everyday selfcare of PLWH to understand the reasoned decision-making that PLWH use in managing not only their medications but also their lives.

Primary care interventions for dementia caregivers: 2-year outcomes from the REACH study.

PURPOSE: This study developed and tested two 24-month primary care interventions to alleviate the psychological distress suffered by the caregivers of those with Alzheimer's disease. The interventions, using targeted educational materials, were patient behavior management only, and patient behavior management plus caregiver stress-coping management. We hypothesized that the addition of the stress-coping component would improve caregiver outcomes. DESIGN AND METHODS: A randomized clinical trial of 167 caregiver-care recipient dyads was run, of whom 76 completed the study without bereavement or placement. RESULTS: During 24 months, caregivers who received the patient behavior management component only, compared with those who also received the stress-coping component, had significantly worse outcomes for general well-being and a trend toward increased risk of depression (i.e., a score of >16 on the Center for Epidemiological Studies Depression scale). There was a studywide improvement for bother associated with care recipient behaviors (according to the Revised Memory and Behavior Problems Checklist). IMPLICATIONS: Our data suggest that brief primary care interventions may be effective in reducing caregiver distress and burden in the long-term management of the dementia patient. They further suggest that interventions that focus only on care recipient behavior, without addressing caregiving issues, may not be as adequate for reducing caregiver distress.

HIV/AIDS medication adherence factors: inner-city clinic patient's self-reports.

OBJECTIVE: To document common facilitators of, and barriers to, HIV/AIDS medication regimen adherence and to identify facilitators and barriers significantly correlated to attainment of higher vs. lower adherence. DESIGN: Data were collected using semi-structured interviews. SETTING: An outpatient clinic serving as the regional treatment center for HIV disease. PATIENTS: A purposive sample of 57 clinic patients was enrolled and completed the study. MAIN OUTCOME MEASURES: Self-reported adherence was measured using a visual analog scale and specified as higher or lower adherence at the 80% level, the approximate median. RESULTS: Many barriers to adherence were more prevalent in the lower adherence group, including complexity of the medication regimen and experiencing side effects. Lower adherence patients also had more problems with privacy and interference with social life and work or school. Patients in the higher adherence group were more concerned with forgetting as an adherence barrier. In general, social support, motivation to avoid AIDS, perceiving the health care practitioner as a facilitator, knowledge of medications, and keeping schedules were identified as factors enhancing adherence. CONCLUSIONS: The high prevalence of many barriers shows that the health care provider has an important role in patient education and support to accomplish increased adherence. Fear and avoidance behaviors in the lower adherence group contrasted with the increased concern with forgetting in the higher adherence group. Communicating treatment advances with patients may help more patients to address many barriers to higher adherence.