About STELLA-FTD

STELLA-FTD (Support via Technology: Living and Learning with Advancing FTD) is a program for family Care Partners that addresses the challenges that come with a type of dementia called frontotemporal degeneration, or FTD. A family caregiver or “Care Partner” is anyone who cares for a person with FTD. Family includes anyone you think of as “family,” such as a relative, close friend, or partner. They do not have to be related by blood.

STELLA-FTD is a completely online study that helps educate and support family Care Partners by teaching ways to help manage the challenges caused by FTD. Our study includes 8 online group sessions led by “Guides” who are trained research staff at the Oregon Alzheimer’s Disease Research Center (add link here). These sessions occur over videoconference, where Care Partners join via computer, phone, or other device in the comfort of their own home.

Care Partners in the study meet with the Guides and other Care Partners during these sessions where they can share their stories and experiences. The goal of our research is to see if STELLA-FTD helps along the family caregiving journey.

What to expect in STELLA-FTD

This study is for anyone who cares for a family member with FTD. Participation can take up to 36 weeks. If you participate, you will complete:

• 8 small-group videoconference visits to learn how to manage challenges that come with FTD caregiving. Each visit lasts about 1 hour and will be led by professional Guides.
• Weekly review of study materials and resources
• One online survey with demographic questions about yourself and your family member
• Brief surveys sent to your email every week
• Six longer surveys during the study period about mood, coping, and family member behaviors
• An optional focus group

Does the study provide a stipend?

This research study is funded by the NIH National Institute on Aging. The grant number is R01AG084523, and it is approved by the Oregon Health & Science Institutional Review Board, #26023. This study is anticipated to end June 2030.