Support Via Technology: Living and Learning With Advancing FTD (STELLA-FTD)

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.

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 Gather FTD care partner feedback on STELLA and suggestions for tailoring STELLA for FTD 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).

Revised Memory and Behavior Problems Checklist (change is being assessed) Behavior Problems Checklist

Assesses burden, stress: Higher scores on frequency indicate more upsetting behaviors, higher scores on reactivity indicate more caregiver burden

Measures sense of quality of life for Care Partner; 13 items, higher scores suggest better quality of life

Measures sense of quality of life for person with dementia (filled out by proxy caregiver): 13 items, higher scores suggest better quality of life

measures caregiver self efficacy for symptoms management and community support service use. Scale 10-100, higher scores indicating better sense of self-efficacy

Center for Epidemiologic Studies Depression-10-item scale (change is being assessed); score is 0 (no depression) to 30 (severe depression).

Measures extra/introversion (provides information about introversion/extraversion, no "good" or "bad" scores

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.

Video-recordings and other data from this study may be shared with other investigators for future research studies. A study ID number will be assigned to each participant. Only the investigators and people involved in the conduct of the study will be authorized to link the ID number to the participants. Other investigators who may receive samples of data for research will be given only the ID number which will not identify participants. However, the video-recordings will show participants' faces. Names and any information discussed during the sessions and focus group will be heard in the audio. The faces, names and audio of any other people who enter the camera zone will also be recorded. The information given for this study will be identifiable and will not be private. Participants receive this information on the information sheet.