STELLA-FTD: Support for Family Care Partners of Individuals with Frontotemporal Dementia

This nationwide study, STELLA-FTD, is testing a new program designed to support family caregivers of people with frontotemporal dementia (FTD). The program, delivered through weekly group video calls, aims to help caregivers manage challenging behaviors and find resources. You could join if you are an adult family caregiver providing at least 4 hours of care per week to someone with FTD, and you identify at least two moderately upsetting behaviors in them. The study is looking for 640 participants and is currently recruiting. Researchers will measure if the program helps reduce the frequency and impact of these challenging behaviors on caregivers over several months.

Study design
This is an interventional study with up to 640 participants (320 family Care Partners and 320 Care Recipients). Care Partners will be randomly assigned to one of two groups: a control group or a test group, and you will not know which group you are in.
What's involved
You would participate in 8 weekly, 1-hour group video sessions over 10 consecutive weeks. Data will be collected from you at 1 month and 1 week before the program starts, 4 weeks and 8 weeks after it begins, and then 2 and 6 months after the program ends.
Compensation
Not stated in the trial record.
Follow-up
You will be followed for 6 months after the intervention ends.

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NCT06613204

STELLA-FTD: Examination of a Behavior Change Intervention for FTD Family Care Partners

Recruiting
NAAges 18+InterventionalSupportive care
Oregon Health and Science University
~640 participants
Updated 2025-10-27 on ClinicalTrials.gov
What's tested:STELLA-FTD ControlSTELLA-FTD Test

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Revised Memory and Behavior Problems Checklist, Frequency, Original Scale
Measured over 1 month pre-intervention; 1 week pre-intervention, 4 weeks after intervention start; 8 week post intervention; 2 and 6 months post intervention
+1 more outcome measured
Frontotemporal Dementia
Caregiver Burden
Primary Progressive Aphasia (PPA)
Corticobasal Syndrome
1 sites across 1 states
Oregon1
  • Allison Lindauer, PhD, APRN · PRINCIPAL_INVESTIGATOR · Oregon Health and Science University
  • Aimee Mooney, MA, CCC-SLP · STUDY_DIRECTOR · Oregon Health and Science University

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Do you actually qualify for this trial?

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Eligibility criteria

Inclusion

Adult caring for family member with FTD.
Provides 4 or more hours of care/week. Does not have to reside with.
Identifies at least 2 moderately upsetting behaviors in the person with FTD.
Speaks and understands English to be able to participate in intervention.
Owns a telephone (smartphone, cell phone or landline).
Has email and mailing address to receive computer, study materials and surveys.
Provides informed consent to participate in the research.
Lives in the US
Diagnosis of FTD
Family member of a Care Partner (this can be a relative, spouse, or close kin that is considered family).
Lives in US

Exclusion

No Frontotemporal Degeneration diagnosis.
Unable to leave Care Partner during STELLA-FTD sessions.
Enrolled in hospice.
Unable to find activity for Care Recipient during STELLA-FTD sessions to allow Care Partner to work privately with Guide and other Care Partners.
Hearing and/or vision problems severe enough to prevent participation.
Refuses to be video-recorded during STELLA-FTD sessions.
Unwilling or unable to adequately follow study instructions and participate in study procedures.
  • Revised Memory and Behavior Problems Checklist, Frequency, Original Scale1 month pre-intervention; 1 week pre-intervention, 4 weeks after intervention start; 8 week post intervention; 2 and 6 months post intervention

    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

  • Revised Memory and Behavior Problems Checklist, Reactivity, Original Scale1 month pre-intervention; 1 week pre-intervention, 4 weeks after intervention start; 8 week post intervention; 2 and 6 months post intervention

    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