‘There’s no straight line…’ a consumer-informed intervention for FTD family care partners: the STELLA-FTD pilot study

Abstract

Objectives

Behavioral symptoms and communication challenges are particularly apparent in frontotemporal degenerative (FTD) dementias. There is a paucity of psychoeducation programming specifically tailored to the needs of families with FTD. We revised an existing intervention to meet the needs of these families.

Methods

We used a quasi-experimental approach. In Phase 1, we sought consumer input about an existing intervention. In Phase 2, we modified the intervention based on the qualitative findings from Phase 1 and tested the revised intervention (STELLA-FTD) for feasibility, acceptability and early-stage efficacy. Outcome for Phase 2 included feasibility data and care partner reactivity to upsetting behaviors. Secondary outcomes included data from unobtrusive sleep monitoring. An inductive analysis of transcripts from the Phase 2 STELLA-FTD focus group provides guidance for future revisions.

Results

Fifteen family care partners participated in the Phase 1 focus groups; sixteen care partners enrolled in Phase 2. Testing in Phase 2 revealed that the care partners found our consumer-informed revised intervention both feasible and acceptable. The post-intervention findings suggest STELLA-FTD has the potential to reduce care partner reactivity to upsetting behaviors and to decrease care partner burden. Sleep did not change over the 8-week intervention.

Conclusions

The revised STELLA-FTD intervention was found to be feasible and acceptable, and has potential to improve care partner burden for families living with FTD. Providing the intervention via telehealth maximized access and engaged rehabilitation specialists in providing disease management content. Future revisions will include examination of efficacy and mechanism of action (OHSU IRB # 00022721, ClinicalTrials.gov NCT05338710).

Keywords:

• Frontotemporal dementia
• caregiver
• behaviors
• intervention

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This study was funded by the Association for Frontotemporal Degeneration (AFTD) and the Oregon Roybal Center for Care Support Translational Research Advantaged by Integrating Technology (ORCASTRAIT), United States National Institute on Aging (NIA) (P30AG024978), and the Oregon Alzheimer’s Disease Center, NIA (P30AG66518). Portions of the findings were presented as a poster at the 2021 Gerontological Society of America Annual Meeting, United States. STELLA-FTD received approval from the Oregon Health & Science (OHSU) Institutional Review Board, # 00022721. STELLA-FTD is listed with ClinicalTrials.gov (NCT05338710). All staff completed human subjects research and responsible conduct of research training and have no conflicts of interest.