Isolation was pervasive across all groups. Among caregivers, 61% reported feeling “always” or “often” isolated; among spouses/partners, 59% also experienced these levels. Of individuals diagnosed, 42% reported feeling “always” or “often” isolated, with an additional 32% reporting “sometimes.” No significant differences in isolation were observed across living arrangements or geographic settings. High levels of isolation were reported equally by those living alone, with family, or in care facilities, and across urban, suburban, rural, and remote environments. Contributing factors included communication difficulties, behavioral changes, and stigma surrounding FTD.

Social isolation is a widespread challenge for individuals with FTD and their care partners, independent of residence type. Interventions must address the underlying drivers of disconnection such as impaired communication, caregiver stress, and stigma rather than focusing solely on living arrangements. Inclusive strategies to foster meaningful engagement and strengthen support systems are critical to improving quality of life in this population.