Behavioral and psychological symptoms (agitation, aggression, among many others; aka BPSD) are hallmarks of Alzheimer's disease and related dementias (ADRD). BPSD dominate disease presentation, occur across etiologies and disease trajectories, and have significant negative consequences for persons with dementia, family members, and society at-large. Although there are no FDA approved medications to treat BPSD, psychotropic medications (including anti-psychotics) are commonly used with limited efficacy and high risk. Nonpharmacologic strategies are considered first-line treatments and have proven efficacy, but families have little knowledge of and access to strategies and are left on their own to manage BPSD. In response, we developed an easy-to-use, web-based platform, WeCareAdvisor, through a previously funded NINR grant (R01 NR014200) for use by family caregivers. The tool provides caregivers with knowledge about dementia, daily tips, and a systematic approach for describing, investigating, creating and evaluating strategies using an approach we developed (DICE) that systematically guides selection of strategies to match symptom presentation. Our pilot randomized study (N=57; NIA-Stage 1) compared an initial treatment group to a 1- month waitlist control with caregivers receiving weekly telephone calls and emails encouraging tool use. This pilot demonstrated proof-of-concept with 100% of caregivers using the tool. After 1 month of use, both the initial treatment and the waitlist control groups showed significant within group benefits in caregiver (distress, confidence) and BPSD (frequency and severity) outcomes. Additionally, there was significant improvement in caregiver distress in the initial treatment group as compared to the waitlist group. Unclear, is whether prompts were necessary for tool use and/or to derive benefit. In response to PAR-18-027, we propose to test the efficacy of WeCareAdvisor (NIA - Stage II) and tool utilization in 326 diverse caregivers using a two-group, randomized design; caregivers will be assigned to immediate treatment or 3-month waitlist control groups.
Our specific aims are to test: 1) Short-term efficacy (1-month) of WeCareAdvisor on caregiver distress, confidence managing BPSD, or BPSD frequency and severity; 2) Longer-term efficacy (3-months) of WeCareAdvisor on caregiver distress, confidence managing BPSD, or BPSD frequency and severity. We will also examine whether the waitlist control group demonstrates similar benefits after using the tool over a 3-month exposure; and 3) Tool utilization and outcomes using different reminders (telephone + email or email only). We will also evaluate whether tool utilization is sustained without prompts in months 3-6 for the initial treatment group. Exploratory aims will examine frequency of use of tool components, impact on psychotropic medication use, function, and other outcomes; and mediator (theoretically-derived variables), and moderator (race, relationship) effects. This proposal is novel in assessing efficacy and utilization of a tool that has great potential to impact dementia care by providing caregivers with on-demand access to BPSD management strategies.
Behavioral and psychological symptoms (agitation, aggression, rejection of care, wandering and so forth, aka BPSD), a key symptom of dementia, are universal, occur throughout disease progression and across etiologies, are associated with increased health care utilization and nursing home placement, and cause intense upset and burden to families. Families need on-demand knowledge and skills to monitor behaviors, identify precipitating conditions, and learn proven, practical strategies for preventing, managing and eliminating BPSD. This efficacy trial tests an easy-to-use, web-based tool (WeCareAdvisor) with 326 racially diverse family caregivers that provides customized education and behavioral management strategies to lessen caregiver distress, and improve caregiver confidence, and reduce BPSD in persons living with dementia.