stella-ftd: examination of a behavior change intervention for ftd family care partners

Conditions: Frontotemporal Dementia; Caregiver Burden; Primary Progressive Aphasia(PPA); Corticobasal Syndrome

Summary: the purpose of this nationwide study is to test stella-ftd (support via telehealth: living and learning with advancing alzheimer's disease)-ftd, an intervention to specifically address the needs of family care partners of persons with frontotemporal degeneration (ftd). stella-ftd is a multicomponent video-conference based intervention designed to facilitate effective use of community and peer resources to foster effective management of behavioral and psychological symptoms of dementia. the study is recruiting families from across the us.

the study will enroll a total sample of up to 640 participants: 320 family care partners and their 320 care recipients with ftd. for our study "family care partner" includes any person who is considered "family" to the person with ftd, such as direct relations, fictive kin, close friends and neighbors. "care recipient" is defined as an individual with an ftd diagnosis noted by the aftd: bv-ftd, ppa, progressive supranuclear palsy (psp), corticobasal degeneration (cbd), or als with ftd. care recipients with ftd will not participate in intervention but will be consented (and thus enrolled) because data will collected about them. the study will test to see if our program helps care partners. the stella-ftd intervention is delivered over 8 sessions within 10 consecutive weeks in 1-hour "live" video-based group sessions led by two guides. there will be two intervention groups, the control group and the test group. there will be up to 8 care partners per group, which allows for the development of mutual trust and commitment. care partners will be randomized to either the test or control group using an electronic randomization process and will be blinded to their group designation. both groups will receive information and support (via videoconferencing). the test group will receive a different program than the control group. care partners will fill out 6 long surveys while in the study, and a weekly brief survey.

Eligibility criteria:
inclusion criteria: family care partner * adult caring for family member with ftd. * provides 4 or more hours of care/week. does not have to reside with. * identifies at least 2 moderately upsetting behaviors in the person with ftd. * speaks and understands english to be able to participate in intervention. * owns a telephone (smartphone, cell phone or landline). * has email and mailing address to receive computer, study materials and surveys. * provides informed consent to participate in the research. * lives in the us inclusion criteria: person with ftd * diagnosis of ftd * family member of a care partner (this can be a relative, spouse, or close kin that is considered family). * lives in us exclusion criteria: person with ftd * no frontotemporal degeneration diagnosis. * unable to leave care partner during stella-ftd sessions. * enrolled in hospice. exclusion criteria: family care partner * unable to find activity for care recipient during stella-ftd sessions to allow care partner to work privately with guide and other care partners. * hearing and/or vision problems severe enough to prevent participation. * refuses to be video-recorded during stella-ftd sessions. * unwilling or unable to adequately follow study instructions and participate in study procedures.

Keywords: behavioral intervention ftd