Providing care for a family member with Alzheimer's disease and related dementias (ADRD,
aka, "dementia") is both rewarding and risky. Care partners exposed to chronic stress,
often over years, are susceptible to physical and psychological ailments. Dementia
involves neurodegeneration and those affected typically depend on family members for
support and physical care. The "care partners" for those with dementia often experience
concerning psychological and physical outcomes due to the demands of caregiving. No
matter what type of dementia, most care partners experience some burden. The burden is
often related to the behavioral symptoms that most people with dementia experience.
Care partners for those with dementia experience burden, grief, exhaustion and physical
ailments. Programs for these care partners are more available. Effective interventions
that reduce care partner burden and health risks are also available, but various factors
impede participation, including distance, cost, behavioral symptoms of dementia, stigma
and social anxiety. Recognizing the need to reduce barriers to access, scientists have
turned to internet-based interventions.
The STELLA suite of research studies addresses the need for easily accessible, effective
interventions designed to reduce burden in care partners for those with dementia. These
studies examine the acceptability, feasibility, and efficacy of interventions modeled on
Teri's psychoeducational behavior change intervention. We have completed two pilot
studies for care partners for those with dementia using interventions with the STELLA-R
precursor. These studies found early efficacy and acceptability for the intervention. We
are currently testing a STELLA intervention which uses objective, technology-based
assessments (OHSU IRB # 19306) and another, larger study which tests a STELLA
intervention with a large national sample (OHSU IRB # 22288; NIA R01AG067546). In
addition, with funding from the Association for Frontotemporal Degeneration (AFTD) we
tested a similar intervention (STELLA-FTD) for care partners caring for a family member
with frontotemporal dementia (OHSU IRB # 22721).
In all STELLA studies care partners work with professional guides to use the ABC analytic
approach to describe a distressing behavior, then identify its activators and
consequences. With this information, care partners can develop plans to reduce behavioral
symptoms. In this proposed study, we will assess an online version of Tele-STELLA.
STELLA-R is informed by the World Health Organization (WHO) guidance to include
rehabilitation science in dementia care to facilitate effective management of the
advancing behavioral, communication, physical and social changes that come with
progressive neurodegenerative dementias (e.g., Alzheimer's disease, frontotemporal
degeneration, Lewy Body dementia). Grounded in self-efficacy theory and foundational
research, STELLA-R will train care partners to address current behavioral symptoms and
prepare for future ones.
The specific aims of this study are:
Aim 1. Assess feasibility and acceptability of STELLA-R
Aim 2. Compare the efficacy of STELLA-R in reducing care partner reactivity to
dementia-related behavioral symptoms between two groups.