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.