Using Technology to Support Care Partners for Persons with Alzheimer's Disease: Tele-STELLA

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PROJECT SUMMARY Alzheimer's disease and related dementias (ADRD) extract a physical, mental and financial toll from family care partners caring for those affected. In the later stages of disease, behavioral and psychological symptoms of dementia (BPSD) can add to care partner burden, increasing the risk of depression in CPs and long-term care placement for those with ADRD. Interventions that reduce CP burden are available, but CP access to them is limited by cost, distance, care demands and stigma. Further, most interventions are not tailored to the later stages of disease, when BPSD are more common. The purpose of this NIH Stage 1B mixed methods study is to test the feasibility, acceptability and efficacy of a telehealth-based intervention for family care partners (CP) for those with ADRD. Specifically, we aim to refine and optimize the multi-site Tele-STELLA (Support via TEchnology: Living and Learning with Advancing ADRD) intervention. Tele-STELLA is a video- conference based intervention that CPs can access from their own homes. Tele-STELLA provides a gradual introduction to education and peer support for stressed care partners. The intervention begins one-to-one support with a Tele-STELLA Guide (a nurse or psychologist), then advances to one Guide to four CPs. After completing eight hour-long sessions (over eight weeks), CPs will join up to twenty CPs, with two Guides, in a peer component modeled on the ECHO (Extension of Community Healthcare Outcomes) template. The intervention is specifically for CPs, no care-recipients with ADRD will be in this study. However, the skills CPs develop in Tele-STELLA will be integrated into the care of the person with dementia, thus reducing their behaviors. We hypothesize that reducing the frequency of behavioral symptoms in the person with ADRD will improve care partner affective symptoms (burden, depression, grief) and quality of life for care partners and those with dementia. This mixed-methods study will assess the feasibility of implementing Tele-STELLA across three sites (Oregon, Kentucky and Georgia) with 150 CPs. We will recruit rural and African American CPs, as well as white CPs, for this study. We will assess consumer acceptability and treatment fidelity. We will establish the efficacy of Tele-STELLA on reducing the frequency of behavioral and psychological symptoms of dementia (BPSD) in persons with ADRD. We will measure efficacy using pre-post assessments and linear regression strategies to assess the effect of Tele-STELLA participation on care partner burden. Focus groups will be used to seek feedback about program acceptability. Treatment fidelity will be assessed with expert review of video-taped sessions. The foundation of this proposal was laid with two pilot studies which assessed early versions of Tele-STELLA. The next step, and the goal of this proposal, is to thoroughly test the intervention across sites to prepare it for a multi-site randomized controlled trial. Our long term goal is to reduce the psychological burden CPs experience by providing the Tele-STELLA intervention for any CP who has access to a device (computer, smartphone or tablet) and an internet connection.