STELLA-FTD: Examination of a Behavior Change Intervention for FTD Family Care Partners

PROJECT SUMMARY This NIH Stage 1B study (9) will advance development of an intervention, STELLA-FTD (Support via Technology: Living and Learning with Advancing FTD), that is designed to address the needs of the approximately 50,000 family members in the US caring for someone with frontotemporal dementia (FTD). The

STELLA-FTD intervention is framed by foundational research and informed by rehabilitative and nursing science. This study is important for two reasons. First, it addresses an important gap in care partner behavioral interventions. FTD is the most common dementia in persons under age 65, and one of the hallmark

symptoms of FTD is distressing behaviors; yet, few behavior-focused interventions exist for FTD care partners. This study tests the preliminary efficacy of STELLA-FTD in reducing care partner burden related to the behavioral symptoms that come with FTD (e.g., disinhibition, apathy, agitation). Second this study tests the

mechanism of action of the well-known ABC behavioral change technique. The ABC analytic approach involves identifying a behavior, then the behavior's activators and consequences. This approach is well-known in the caregiving world and research has demonstrated positive results in reducing care partner burden, but

none has isolated the essential components of the ABC analytic approach. This limits future research and, importantly, scaling to community-based use. Upon completion of this study, should the hypotheses be proven, STELLA-FTD efficacy will be documented and the mechanism of action will be explained. This information will

be the foundation for future NIH Stage 2 testing of STELLA-FTD. This 36-week randomized controlled (RCT), two-group, repeated measures trial with FTD family care partners will evaluate whether training in the use of the ABC analytic approach (test) reduces burden when compared to a dose-matched psychoeducational curriculum (control). This design

allows for examination of the mechanism of action of STELLA-FTD by isolating the active component to determine its relationship with self-efficacy and care partner burden. The specific aims include testing of a) the intervention to assess preliminary efficacy, b) the mechanism of action and c) the mediating

effect of self-efficacy on burden. In addition to testing STELLA-FTD, we will standardize materials and fidelity protocols to prepare the intervention for future NIH Stage 2 testing. We will test STELLA-FTD with 300 care partners. Both groups (n=150/group) will receive education about FTD and peer support. The test

group will receive specific instruction in the ABC analytic approach, the control group will not. Efficacy will be assessed measuring burden between and within groups using Teri's Revised Memory and Behavior Problems Checklist (18). The key components of the mechanism of action will be isolated using the randomized design,

with pre- and post-assessments of burden and self-efficacy of all participants. The data analysis will examine burden between and within groups, controlling for diagnosis type and demographic data.