Support Via Technology: Living and Learning With Advancing FTD
Condition: Caregivers Burnout; Frontotemporal Dementia
MeSH terms: Frontotemporal Dementia; Aphasia, Primary Progressive; Pick Disease of the Brain; Caregiver Burden
Study type: Interventional

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).
    

Intervention name(s): STELLA-FTD
Intervention type(s): Other
Intervention description(s): Behavioral intervention for caregivers for those with FTD
Intervention model: Single Group Assignment
Intervention model description: 8-week single group intervention
Masking: None (Open Label)
Primary purpose: Treatment