STELLA-FTD: Examination of a Behavior Change Intervention for FTD Family Care Partners
STELLA-FTD
STELLA-FTD
Sponsor study identifier
Secondary identifiers
NIH
interventional
640
1 country
1
Study Start
June 23, 2025
Actual (reported)Primary Completion
June 2029
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Study Completion
June 2029
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
The purpose of this nationwide study is to test STELLA-FTD (Support via Telehealth: Living and Learning with Advancing Alzheimer's Disease)-FTD, an intervention to specifically address the needs of family Care Partners of persons with frontotemporal degeneration (FTD). STELLA-FTD is a multicomponent videoconference-based intervention designed to facilitate effective use of community and peer resources to foster effective management of behavioral and psychological symptoms of dementia. The study is recruiting families from across the United States.
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
June 2029
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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Some registry-reported names shown below are not yet linked in this graph.
Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
September 17, 2024
Actual (reported)September 25, 2024
Actual (reported)June 23, 2025
Actual (reported)June 2029
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
June 2029
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Revised Memory and Behavior Problems Checklist, Frequency, Original Scale
Efficacy will be assessed by measuring pre/post changes on the RMBPC. The RMBPC is a 24-item caregiver report measure, 5-point Likert scale with higher scores on frequency indicate more upsetting behaviors Frequency range is 0 (never occurred) to 4 (daily or more often). Frequency score range is 0 to 96
1 month pre-intervention; 1 week pre-intervention, 4 weeks after intervention start; 8 week post intervention; 2 and 6 months post intervention
Revised Memory and Behavior Problems Checklist, Reactivity, Original Scale
Efficacy will be assessed by measuring pre/post changes on the RMBPC. The RMBPC is a 24-item caregiver report measure, 5-point Likert scale with higher scores on reactivity indicate more Care Partner burden. Frequency range is 0 (no burden) to 4 (high burden). Frequency score range is 0 to 96
1 month pre-intervention; 1 week pre-intervention, 4 weeks after intervention start; 8 week post intervention; 2 and 6 months post intervention
Control group, receives information and support in a group setting (N=160 Care Partners).
Test group, receives information and support in a group setting, but program is different from control (N=160 Care Partners).
Care recipients are consented to inform them of their rights, but they do not take part in any activities (N=320 Care Recipients).
Participants receive information about FTD and support via weekly group video-conference-based meetings.
The test group receives a information and support, but with a focus that is different from the Control Group
Oregon Health & Science University
Portland, Oregon, 97239, United States
Lindauer A, Smith S, Gothard S, Mattek N, Tran L, Mooney A. 'There's no straight line...' a consumer-informed intervention for FTD family care partners: the STELLA-FTD pilot study. Aging Ment Health. 2023 Sep-Oct;27(10):2000-2010. doi: 10.1080/13607863.2023.2250741. Epub 2023 Sep 1.
Allison Lindauer, PhD, APRN
Oregon Health and Science University
Aimee Mooney, MA, CCC-SLP
Oregon Health and Science University
First Submitted
September 17, 2024
First Posted
September 25, 2024
Study Start
June 23, 2025
Actual (reported)Pilot Trial Evaluating Patient Experience With the MemorEM for Patients With Neurological Diseases
SAGE LEAF 2: An Online Program to Reduce Dementia Caregiver Burden
Self-efficacy for symptom management and support service use
1 month pre-intervention; 1 week pre-intervention, 8 week post intervention; 2 and 6 months post intervention
Neuropsychiatric Inventory-Caregiver Self-efficacy Scale
1 month pre-intervention; 1 week pre-intervention, 8 week post intervention; 2 and 6 months post intervention
Preparedness for Caregiving Scale
1 month pre-intervention; 1 week pre-intervention, 8 week post intervention; 2 and 6 months post intervention
Personalized Target Behavior Survey
1 week pre-intervention, 8 week post intervention
Service and Support use survey
1 month pre-intervention; 1 week pre-intervention, 8 week post intervention; 2 and 6 months post intervention
Registry-reported names are shown in full. Names without a link have not yet been matched to a Syfrah profile.
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Primary Completion
June 2029
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Study Completion
June 2029
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Last Updated
October 27, 2025
Record last verified: 2025-10
Aggregated data for journal articles and presentations, IPD via data request to OHSU
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