Disconnected: How Frontotemporal Degeneration Leads to Isolation Regardless of Residence
Mary Krause1, Carrie Milliard1, Robert Reinecker1, Shana Dodge2, Penny Dacks2
1FTD Disorders Registry, 2Association for Frontotemporal Degeneration
Objective:
To examine the extent and nature of social isolation experienced by individuals with Frontotemporal Degeneration (FTD) and their care partners, and to assess whether living arrangements or geographic settings influence these experiences.
Background:
FTD is the umbrella term for a group of rare neurodegenerative disorders affecting the frontal and temporal lobes, leading to progressive impairments in behavior, language, motor function, and cognition. These symptoms frequently contribute to profound social isolation, yet little is known about how isolation varies by living situation or community setting.
Design/Methods:
Data were collected through an anonymous survey via a direct-to-participant registry in February 2025. Respondents included individuals diagnosed with an FTD disorder (139), their spouses/partners (311), biological family members (112), caregivers (50), and others (17). Participants (N=629) were asked how often they felt socially isolated due to FTD symptoms, along with their residential setting (e.g., urban, suburban, rural, or facility-based). Responses were analyzed across living arrangements and geographic classifications.
Results:
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.
Conclusions:
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.
Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.