A hallmark characteristic of dementia of all types is disruptive behavioral symptoms. More so than memory and cognitive impairments, these behaviors are among the most complex, stressful and costly aspects of caring for people with dementia, and often dominate disease presentation. Families are in the forefront of managing behaviors at home, yet they typically do not have the requisite knowledge and skill to identify and monitor precipitating factors and determine effective treatment approaches. There are no FDA approved medications to treat behavioral symptoms, although common clinical practice is to use psychotropic medications such as antipsychotics. However, these medications have limited efficacy, introduce risks of significant side effects and mortality, and do not address the behaviors most problematic to families, making their routine first-line use a poor strategy. Alternately, nonpharmacologic approaches have been shown in randomized trials to have significant benefits without the physical risks of medications. Unfortunately, their use by familie is limited due to the lack of tools to assist with behavioral management at home. To address this gap, the proposed work will employ a mixed-methods strategy to develop and test a multi-media automated algorithmic tool to assist family caregivers in better understanding and managing behavioral symptoms. The tool, WeCare, will efficiently and effectively assist caregivers by systematically guiding them through evidence-informed decision trees to: 1) assess and monitor presence and severity of behavioral symptoms; 2) identify potential precipitating factors and monitor them (e.g., sleep disturbance, pain); 3) recognize and alleviate modifiable underlying contributing factors; 4) use effective verbal and nonverbal communications; 5) discern behavioral symptoms that require medical assistance (pain, sudden onset of aggressive behaviors); and 5) use nonpharmacologic strategies to prevent, minimize or manage behavioral symptoms.
The specific aims are to: #1: Identify in a diverse set of patients, caregivers and providers (total n=60) perceived need for education about assessment and behavioral management, understandings of treatment options and preferences for formatting of the WeCare tool (phase I); #2: Develop a prototype of the WeCare tool and conduct initial testing with caregivers (n=20) to inform tool modifications and instructional elements needed for caregivers to use the tool independently (phase II); and #3). Examine usability and effectiveness of a completed version of the WeCare tool to enhance caregivers' efficacy in behavioral symptom detection and management and reduce behavioral symptoms in patients using two test sites (n=60 dyads/120 people). The research is innovative in its involvement of key stakeholders in the tool development process, use of state-of-the science technology, and algorithmic approach to detecting and monitoring behaviors and selecting nonpharmacologic solutions. WeCare has potential to improve caregiver skills and the care of individuals with dementia who currently do not receive optimal behavioral management.
Disruptive behaviors, a hallmark of dementia, are almost universal, occur throughout disease progression, are associated with increased health care utilization and nursing home placement and cause intense upset and burden to families. Families need knowledge and skills to monitor these behaviors, to identify precipitating conditions, and to learn how to use proven, practical nonpharmacologic strategies for preventing, managing and eliminating behaviors. This research will develop and test a customized, easy-to-use, web-based tool for family caregivers that enables them to assess, manage and track behavioral symptoms and their contributing factors (e.g., pain, sleep disturbance), and that provides tailored strategies for in-home, non-pharmacologic behavior management.
