STELLA-FTD: Telehealth support program for family caregivers of frontotemporal degeneration
STELLA-FTD: Examination of a Behavior Change Intervention for FTD Family Care Partners
This program will see if eight weekly live video group sessions help family caregivers of people with frontotemporal degeneration manage challenging behaviors and connect with community and peer resources.
Quick facts
| Phase | Not applicable |
|---|---|
| Study type | Interventional |
| Enrollment | 640 (estimated) |
| Ages | 18 Years to 100 Years |
| Sex | All |
| Sponsor | Oregon Health and Science University Academic / other |
| Locations | 1 site (Portland, Oregon) |
| Trial ID | NCT06613204 on ClinicalTrials.gov |
What this trial studies
STELLA-FTD is a multicomponent, videoconference-based program delivered in eight one-hour live group sessions over ten weeks and led by two guides. Up to 320 family Care Partners will be randomized, blinded to group assignment, to either the test or control version, with groups capped at eight caregivers to foster peer support. Care Recipients (up to 320) are enrolled for data collection but do not participate in the intervention, and caregivers complete six longer surveys plus brief weekly check-ins. The nationwide study uses electronic randomization and is sponsored by Oregon Health & Science University in collaboration with the National Institute on Aging.
Who should consider this trial
Good fit: Ideal candidates are adult family caregivers in the U.S. who provide at least four hours of care per week for a person with an FTD diagnosis, speak English, can arrange supervision for the care recipient during sessions, and have a phone, email, and mailing address.
Not a fit: Those unlikely to benefit include caregivers who cannot attend live video sessions or arrange care recipient supervision, non-English speakers, residents outside the United States, and care recipients without an FTD diagnosis or who are enrolled in hospice.
Why it matters
Potential benefit: If successful, the program could reduce caregiver burden and improve caregivers' ability to manage behavioral symptoms and access community and peer supports.
How similar studies have performed: Remote, group-based caregiver interventions have shown benefits for caregiver coping and burden in dementia broadly, but tailored telehealth programs specifically for FTD caregivers are less well studied.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: Family Care Partner * 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 Inclusion Criteria: Person with FTD * 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 Criteria: Person with FTD * No Frontotemporal Degeneration diagnosis. * Unable to leave Care Partner during STELLA-FTD sessions. * Enrolled in hospice. Exclusion Criteria: Family Care Partner * 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.
Where this trial is running
Portland, Oregon
- Oregon Health & Science University — Portland, Oregon, United States (Recruiting)
Study contacts
- Principal investigator: Allison Lindauer, PhD, APRN — Oregon Health and Science University
- Study coordinator: Hailey Chatterton, MS
- Email: chatterton@ohsu.edu
- Phone: 503-568-9725
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.