This application is in response to the RFA NR-02-001 """"""""Informal Caregiving Research for Chronic Conditions."""""""" It proposes a randomized control trial to test the effectiveness of a targeted intervention to reduce family caregiver upset with disruptive behaviors and burden, and frequency of behavioral occurrences in persons with Alzheimer's disease and related disorders (ADRD). The study targets 272 highly stressed racially diverse family caregivers providing in-home care to persons at moderate stage dementia, a point in the disease in which behavioral disturbances typically occur and caregiver stress significantly increases. The in-home intervention we plan to test is theory-driven and multidisciplinary and combines empirical evidence with knowledge of best clinical practice. To enhance its clinical applicability, the intervention is designed to be reproducible and its components reimbursable under current Medicare guidelines. The intervention provides families with the requisite knowledge and skills to control their own stress and identify, manage and reduce both the internal (e.g., medical causes) and external (e.g., environmental) factors that may contribute to disruptive behavior in the home. The first intervention component involves a home visit from an advanced practice nurse who will provide education to caregivers about dementia and disruptive behaviors, and screen for and coordinate treatment of underlying medical conditions (e.g., infection) that may contribute to the behavioral disturbance in the person with ADRD. Regardless of medical outcome, the next intervention component involves home visits and telephone contacts by an occupational therapist who will provide in-home caregiver training in (1) stress reduction, (2) problem solving to identify antecedent environmental conditions that provoke behaviors, (3) communication, task and environmental simplification techniques to prevent and manage disruptive behaviors; and (4) environmental modifications (e.g., placement of visual cues, de-cluttering, assistive devices) to minimize excess stimulation and disorientation contributing to target behaviors. The intervention will be tested using a randomized two-group design in which 272 caregivers will be assigned to 6-months of intervention or a usual care control group, and evaluated at baseline, 4 and 6-months.
The specific aims are to (1) test immediate intervention effectiveness (4-months) to reduce caregiver upset with targeted disruptive behaviors (primary outcome): (2) test immediate intervention effectiveness (4-months) to reduce caregiver burden (secondary outcome); (3) test immediate intervention effectiveness (4-months) to reduce occurrence of targeted disruptive behaviors in persons with dementia (secondary outcome); (4) test the intervention maintenance effect (6-months) on caregiver upset and burden and targeted disruptive behaviors; and (5) assess the cost and cost effectiveness of the intervention. We also propose two exploratory aims. We will evaluate the mechanisms of action, or the pathways by which treatment gains are obtained, by examining whether improvement in quality of caregiving through skill acquisition (e.g., self-efficacy, caregiver use of positive communication and task simplification techniques), mediates treatment effectiveness. Second, given that previous research suggests that caregiver characteristics may moderate caregiving experiences and treatment outcomes, we plan to evaluate whether there is a differential treatment effect based on the caregiver's gender, race and relationship to the ADRD patient.
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