Clinical trial NCT05338710: Support Via Technology: Living and Learning With Advancing FTD
Official title: Support Via Technology: Living and Learning With Advancing FTD
Study type: INTERVENTIONAL
Overall status: COMPLETED
Phase: NA
Conditions: Caregivers Burnout
Frontotemporal Dementia
Lead sponsor: Oregon Health and Science University
Sponsor class: OTHER
Collaborators: name: Association for Frontotemporal Degeneration
First posted: 2022-04-21
Enrollment: 16
Sex: ALL
Minimum age (years): 18
Maximum age (years): 100
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Allocation: NA
Intervention model: SINGLE_GROUP
Intervention model description: 8-week single group intervention
Primary purpose: TREATMENT

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.

Detailed description: 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 related dementias (ADRD). However, few interventions address the specific needs of care partners for those with frontotemporal degeneration (FTD), the most common form of dementia in adults under age 60.

Caring for a family member with FTD can affect the psychological, social, and relational health of families. Care partners for those with the disease have higher levels of burden and depression, as well as more sleep disturbances and worse financial strain than care partners for those with ADRD. Psychoeducational interventions can alleviate some of the psychological symptoms associated with dementia caregiving, but few programs have been designed for care partners for persons with FTD. Further, many of the existing programs are inaccessible for families due to distance and cost. The STELLA (Support via TEchnology: Living and Learning with Advancing dementia) intervention is designed to teach ADRD care partners strategies for managing behavioral symptoms associated with dementia. STELLA uses videoconferencing to connect care partners, in their own homes, with experienced Guides (e.g., nurses). The Guides use cognitive behavioral techniques to assist care partners in identifying and implementing strategies to reduce distressing behavioral symptoms in the person with dementia.

Our pilot work found that early versions of STELLA reduced the frequency of behavioral symptoms and care partner reactivity to them. In this study, the investigators will adapt STELLA to specifically address the needs of family care partners for persons with frontotemporal degeneration. Aim 1. Adapt STELLA to the needs of care partners for those with FTD

1. Gather FTD care partner feedback on STELLA and suggestions for tailoring STELLA for FTD
2. Adapt STELLA for FTD care partners based on end-user feedback Aim 2. Assess the feasibility, acceptability and STELLA-FTD with FTD care partners Aim 3. Assess the preliminary efficacy of STELLA-FTD on the primary outcomes: reducing the frequency of behavioral symptoms and care partner reactivity to the symptoms as measured on the Revised Memory and Behavior Problems Checklist (RMBPC).

Eligibility criteria: Inclusion Criteria:

* 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.

Exclusion Criteria:

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

Primary outcomes:
measure: Revised Memory and Behavior Problems Checklist (change is being assessed) Behavior Problems Checklist
timeFrame: Weeks 1 and 9 of study
Secondary outcomes:
measure: Quality of life, care partners and care recipients (change is being assessed)
timeFrame: Weeks 1 and 9 of study
measure: Quality of life, care partners and care recipients (change is being assessed)
timeFrame: Weeks 1 and 9 of study
measure: Family Caregiver Self efficacy scale (change is being assessed)
timeFrame: Weeks 1 and 9 of study
measure: Center for Epidemiologic Studies Depression-10-item scale (change is being assessed); score is 0 (no depression) to 30 (severe depression).
timeFrame: Weeks 1 and 9 of study
measure: Marwit Meuser Caregiver Grief Index (change is being assessed)
timeFrame: Weeks 1 and 9 of study
measure: Caregiver Guilt Questionnaire (change is being assessed)
timeFrame: Weeks 1 and 9 of study
measure: Contact survey
timeFrame: 9 weeks after study start
measure: Experience Survey
timeFrame: 9 weeks after study start
measure: Ten-item personality inventory
timeFrame: Week 1 of study
Other outcomes:
Locations:
city: Portland
country: United States
facility: Oregon Health and Science University, Layton Aging and Alzheimer's Disease Center
state: Oregon
Study officials:
References: