Negative caregiving effects among caregivers of veterans with dementia.

OBJECTIVES: : This investigation was guided by the stress process model and had two objectives: first, to describe the extent of negative caregiving effects for family caregivers of veterans with dementia, and second, to identify salient predictors of negative caregiving effects. DESIGN: : Data were obtained from baseline, structured telephone interviews with family caregivers of veterans enrolled in "Partners in Dementia Care," a clinical trial testing a care coordination intervention. PARTICIPANTS: : The study included 486 family caregivers of veterans with dementia who received primary care from the Department of Veterans Affairs healthcare system and lived at home. MEASUREMENT: : Six negative caregiving effects were described as follows: unmet needs, four role and intrapsychic strains, and depression. Predictive factors included the following: cognitive impairment, behavior problems, personal care dependency, number of chronic conditions, and characteristics of the caregiving context. RESULTS: : Sizeable portions of caregivers experienced negative caregiving effects; most common were unmet needs, social isolation, and depression. Cognitive, behavioral, and functional symptoms of dementia and other coexisting chronic conditions explained significant variation in all negative caregiving effects. Caregiving context had little impact. Behavior problems were the most consistent predictor; personal care dependency and other chronic conditions were also important. CONCLUSIONS: : Family caregivers, the foundation of long-term care for veterans with dementia who live at home, experience a variety of negative caregiving effects. Negative effects are greater when veterans exhibit behavior problems, require extensive assistance with personal care, and have a greater number of coexisting chronic conditions. Negative caregiving effects are an important target for interventions that support family caregivers and promote continued care at home.

Characteristics of Depressed Caregivers of Veterans With Dementia.

This study examined the characteristics of caregivers and persons with dementia (PWD) to determine their association with caregiver depression. Participants included 508 PWD (veterans) and 486 caregivers from Boston, Houston, Providence, Beaumont (Texas), and Oklahoma City, identified from diagnoses from medical records and recruited from February 2007 to July 2009, for a larger study evaluating Partners in Dementia Care, a care-coordination intervention. Characteristics evaluated for PWD included activities of daily living, instrumental activities of daily living, cognitive impairment, and disruptive behavior. Caregiver characteristics evaluated included caregiver unmet needs, support-service use, and number of informal helpers. Caregiver depression was measured using the Iowa form 11-item Center for Epidemiologic Studies Depression Scale. Depressed caregivers reported significantly more unmet needs than the nondepressed caregivers. Depressed caregivers also reported a high frequency of disruptive behavior in their PWD. Caregiver perceptions of unmet needs may be an important target for intervention.

Impact of the care coordination program "Partners in Dementia Care" on veterans' hospital admissions and emergency department visits.

INTRODUCTION: "Partners in Dementia Care" (PDC) tested a care-coordination program based on partnerships between Veterans Affairs (VA) medical centers and Alzheimer's Association chapters. The hypothesis posited PDC would reduce the likelihood and number of veterans' hospital admissions and emergency department (ED) visits, particularly for those with more cognitive impairment or behavioral symptoms. METHODS: The sample included 328 veterans with dementia and their primary family or friend caregivers from five matched sites (two randomly selected treatment sites). Data came from VA records; supplemented by caregiver research interviews. Regression analyses using the likelihood and number of hospital and ED visits as outcomes tested for overall treatment-comparison group differences and statistical interactions with cognitive impairment and behavioral symptoms. RESULTS: Consistent with the hypothesis, three significant interactions showed treatment-group veterans, with more cognitive impairment and behavioral symptoms, had fewer hospital admissions and ED visits than comparison-group veterans. There were no differences in the likelihood of hospital or ED use. DISCUSSION: PDC, a low-cost program for veterans and caregivers, was effective in reducing the number, but not the likelihood, of hospital admissions and ED visits. Reductions in service use were greater when caregivers reported more difficulties with veterans' symptoms, which in the absence of PDC would place veterans at risk of being high-volume, high-cost service users.Clinical Trial Registration: ClinicalTrials.gov: NCT00291161.

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.

Impact of family members on nurse assistants: what helps, what hurts.

This qualitative study focuses on nurse assistant reports of both positive and negative behaviors exhibited by family members of cognitively impaired residents. The information reported is obtained from in-person interviews with 114 nurse assistants in 5 skilled nursing facilities (3 philanthropic, 2 proprietary) in Greater Cleveland, Ohio. Nurse assistants were predominantly female (89 percent), white (60 percent), with a mean age of 33, and had been caring for cognitively impaired nursing home residents for an average of five years. Content analyses of nurse assistants' responses reveal five categories of family members' positive behaviors and four categories of negative behaviors. This article focuses on these themes and suggests topics for educational interventions for family members and nurse assistants who care for cognitively impaired nursing home residents. Topics include coping with family members' feelings of guilt and related behaviors, understanding longstanding family relationship issues, and understanding possible reasons for decisions family members make regarding care of their relatives.

A controlled trial of Partners in Dementia Care: veteran outcomes after six and twelve months.

INTRODUCTION: "Partners in Dementia Care" (PDC) tested the effectiveness of a care-coordination program integrating healthcare and community services and supporting veterans with dementia and their caregivers. Delivered via partnerships between Veterans Affairs medical centers and Alzheimer's Association chapters, PDC targeted both patients and caregivers, distinguishing it from many non-pharmacological interventions. Hypotheses posited PDC would improve five veteran self-reported outcomes: 1) unmet need, 2) embarrassment about memory problems, 3) isolation, 4) relationship strain and 5) depression. Greater impact was expected for more impaired veterans. A unique feature was self-reported research data collected from veterans with dementia. METHODS AND FINDINGS: Five matched communities were study sites. Two randomly selected sites received PDC for 12 months; comparison sites received usual care. Three structured telephone interviews were completed every 6 months with veterans who could participate. RESULTS: Of 508 consenting veterans, 333 (65.6%) completed baseline interviews. Among those who completed baseline interviews, 263 (79.0%) completed 6-month follow-ups and 194 (58.3%) completed 12-month follow-ups. Regression analyses showed PDC veterans had significantly less adverse outcomes than those receiving usual care, particularly for more impaired veterans after 6 months, including reduced relationship strain (B = -0.09; p = 0.05), depression (B = -0.10; p = 0.03), and unmet need (B = -0.28; p = 0.02; and B = -0.52; p = 0.08). PDC veterans also had less embarrassment about memory problems (B = -0.24; p = 0.08). At 12 months, more impaired veterans had further reductions in unmet need (B = -0.96; p < 0.01) and embarrassment (B = -0.05; p = 0.02). Limitations included use of matched comparison sites rather than within-site randomization and lack of consideration for variation within the PDC group in amounts and types of assistance provided. CONCLUSIONS: Partnerships between community and health organizations have the potential to meet the dementia-related needs and improve the psychosocial functioning of persons with dementia. TRIAL REGISTRY: NCT00291161.

Improved Strain and Psychosocial Outcomes for Caregivers of Individuals with Dementia: Findings from Project ANSWERS.

PURPOSE: This study examined the efficacy of a newly developed intervention, Acquiring New Skills While Enhancing Remaining Strengths (ANSWERS), for family caregivers of individuals with dementia. ANSWERS was designed for dyads comprised of an individual with dementia and his/her family caregiver. Using a strength-based approach, ANSWERS combined educational skills (traditionally used with caregivers) and cognitive rehabilitation skills training (traditionally used with individuals with dementia) into a single protocol for addressing the dyad's care issues and needs. Key domains addressed by the intervention included: education about dementia and memory loss; effective communication; managing memory; staying active; and recognizing emotions and behaviors. This analysis focused on outcomes for caregivers. DESIGN & METHODS: The Stress Process Model guided the study's hypotheses and design. Caregiving dyads were randomly assigned to the control or intervention conditions. Intervention dyads received 6-curriculum guided sessions with an intervention specialist. Data came from in-person baseline interviews with caregivers conducted prior to randomization and follow-up interviews conducted approximately 14.56 weekspost-baseline. RESULTS: Intervention caregivers, compared to controls, had decreased care-related strain as indicated by lower emotional health strain, dyadic relationship strain, role captivity, and higher caregiving mastery. Additionally, intervention caregivers had improved well-being as indicated by fewer symptoms of depression and anxiety. IMPLICATIONS: ANSWERS was efficacious in improving key strain and psychosocial outcomes for caregivers. Features essential to the success of ANSWERS included a strength-based approach for selecting, developing, and implementing care goals, as well as teaching caregivers educational and cognitive rehabilitation skills for addressing care needs.

Caregiver outcomes of partners in dementia care: effect of a care coordination program for veterans with dementia and their family members and friends.

The objective is to test the effectiveness of Partners in Dementia Care (PDC), a care-coordination program that integrates and improves access to medical and nonmedical services, while strengthening the informal care network and providing information, coaching, and emotional support. PDC was delivered via a partnership between Veterans Affairs (VA) Medical Centers (VAMCs) and Alzheimer's Association chapters, for caregivers of veterans with dementia living in the community and receiving primary care from the VA. The initial sample was 486 caregivers of 508 veterans with diagnosed dementia. Outcomes were evaluated for 394 and 324 caregivers who completed 6- and 12- month follow-up, respectively. PDC had a standardized protocol that included assessment and reassessment, action planning, and ongoing monitoring. It was delivered by telephone and e-mail for cost efficiency and the ability to handle caseloads of 100 to 125. Care coordinators from VAMCs and Alzheimer's Association chapters worked as a team using a shared computerized record. A variety of caregiver outcomes was measured after 6 and 12 months. Intervention group caregivers had significant improvements in outcomes representing unmet needs, three types of caregiver strains, depression, and two support resources. Most improvements were evident after 6 months, with more-limited improvements from Months 6 to 12. Some outcomes improved for all caregivers, whereas some improved for caregivers experiencing more initial difficulties or caring for veterans with more-severe impairments. PDC is a promising model that improves linkages between healthcare services and community services, which is a goal of several new national initiatives such as the National Plan to Address Alzheimer's Disease and a proposed amendment to the Older Americans Act.

Partners in dementia care: a care coordination intervention for individuals with dementia and their family caregivers.

PURPOSE: This article provides a detailed description of a telephone-based care coordination intervention, Partners in Dementia Care (PDC), for veterans with dementia and their family caregivers. Essential features of PDC included (a) formal partnerships between Veterans Affairs (VA) medical centers and Alzheimer's Association Chapters; (b) a multidimensional assessment and treatment approach, (c) ongoing monitoring and long-term relationships with families, and (d) a computerized information system to guide service delivery and fidelity monitoring. DESIGN AND METHODS: Data illustrating the use of the intervention were displayed for 93 veterans and their caregivers after 12 months in PDC. Descriptive data were provided for each major component of the intervention protocol, including: initial assessment, goals, action steps, and on-going monitoring. Care coordinators completed a 12-item questionnaire ascertaining the acceptability and feasibility of implementing PDC. RESULTS: Data from the assessments and goals indicated areas of need were not limited to any one issue or subset of issues, but were widely distributed across a variety of domains. Findings for action steps suggested a primary focus on getting/giving information and action-oriented tasks to access services and programs. Most action steps were assigned and completed by veteran's spouses and the majority were successfully accomplished. On average, families had two contacts per month with care coordinators. Few barriers were indicated by care coordinators in implementing PDC, highlighting the acceptability and feasibility of the PDC protocol. IMPLICATIONS: PDC addressed the diverse needs of individuals with dementia and their caregivers, including important non-medical care issues, such as understanding VA benefits, accessing community resources, and addressing caregiver strain. PDC proved to be a feasible model that was complementary to the existing programs of the 2 partnering organizations.