Support Via Technology: Living and Learning With Advancing FTD

NCT05338710 | Completed Results

• 1 other identifier: STUDY00022721
• Study Type: interventional
• Target: 16
• Locations: 1 country
• Sites: 1

Brief Summary

Much effort over the last several decades has been devoted to developing and implementing psychoeducational interventions for family caregiving partners for those with Alzheimer's and relatedm dementias (ADRD). However, few interventions address the specific needs of care partners for those with frontotemporal degeneration (FTD). This study tests an intervention to support family caregivers for those with FTD.

Conditions

Caregivers Burnout; Frontotemporal Dementia

Outcome Measures

Primary Outcomes (1)

• Revised Memory and Behavior Problems Checklist (RMBPC)

  The primary outcome variable, reactivity, will be assessed with the RMBPC, which measures the frequency of care recipient behavioral symptoms and care partner reactions to these behaviors. The RMBPC was chosen because it aligns with our theoretical foundation that assumes burden is a result of care partner reactions to behavioral symptoms. The RMBPC is a 29-item caregiver report measure, 5-point Likert scale with frequency measuring from 0 (never occurred) to 4 (daily or more often) and reactivity measuring from 0 (not at all) to 4 (extremely) for a total score between 0-116 for each subscale (frequency subscale and reactivity subscale). Higher scores indicate greater behavioral problems.

  Pre-intervention (at Week 1) and Post-Intervention (at Week 8)

Secondary Outcomes (9)

• Quality of Life Alzheimer's Disease, Care Partner

  Pre-intervention (at Week 1) and Post-Intervention (at Week 8)

• Family Caregiver Self-Efficacy Scale

  Pre-intervention (at Week 1) and Post-Intervention (at Week 8)

• Center for Epidemiologic Studies Depression

  Pre-intervention (at Week 1) and Post-Intervention (at Week 8)

• Marwit Meuser Caregiver Grief Index

  Pre-intervention (at Week 1) and Post-Intervention (at Week 8)

• Caregiver Guilt Questionnaire (CGQ)

  Pre-intervention (at Week 1) and Post-Intervention (at Week 8)

Study Arms (1)

STELLA-FTD study

EXPERIMENTAL

One group only

Other: STELLA-FTD

Interventions

STELLA-FTD OTHER

Behavioral intervention for caregivers for those with FTD

STELLA-FTD study

Eligibility Criteria

• Age: 18 Years - 100 Years
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• Care Partner for family member, close friend or kin with FTD, primary progressive aphasia, progressive supranuclear palsy or other frontotemporal degenerative dementia
• Must speak English
• Must be able to see and hear the videoconference-based interactions.

You may not qualify if:

• \- Family member does not care for someone with FTD conditions.

Sponsors & Collaborators

• Oregon Health and Science University: lead
• The Association for Frontotemporal Degeneration: collaborator

Study Sites (1)

Oregon Health and Science University, Layton Aging and Alzheimer's Disease Center

Portland, Oregon, 97239, United States

Location

Related Publications (1)

• 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.

  PMID: 37655616 RESULT

MeSH Terms

Conditions

Frontotemporal Dementia

Condition Hierarchy (Ancestors)

Frontotemporal Lobar Degeneration; Dementia; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; TDP-43 Proteinopathies; Neurodegenerative Diseases; Proteostasis Deficiencies; Metabolic Diseases; Nutritional and Metabolic Diseases; Neurocognitive Disorders; Mental Disorders

Limitations and Caveats

The small sample size limited our ability to identify the effect of study intervention on burden in this important caregiving cohort. Limits to classic in-person recruitment strategies due to COVID-19 restrictions made personalized recruitment efforts challenging. This was offset by a multimodal online recruitment strategy that targeted care partners across the western United States.

Results Point of Contact

• Title: Allison Lindauer, PhD, APRN
• Organization: OHSU

lindauer@ohsu.edu

5034944347

Study Officials

• Allison Lindauer

  Oregon Health and Science University

  PRINCIPAL INVESTIGATOR

Publication Agreements

• PI is Sponsor Employee: No
• Restrictive Agreement: No

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: TREATMENT
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Principal Investigator

Model Details: 8-week single group intervention

Study Record Dates

• First Submitted: March 4, 2022
• First Posted: April 21, 2022
• Study Start: January 14, 2021
• Primary Completion: March 4, 2022
• Study Completion: March 4, 2022
• Last Updated: November 25, 2025
• Results First Posted: November 25, 2025

Record last verified: 2025-11

Data Sharing

• IPD Sharing: Will share
• Shared Documents: STUDY PROTOCOL, SAP, ICF, ANALYTIC CODE
• Time Frame: Data is currently available and will be available indefinitely.
• Access Criteria: Data is entered in to access-controlled local repository (#6845) and NACC National Repository.

Locations

US (1)