PRESS & NEWS
Quick Question February 2025 Result:
629 people answered the FTD Disorders Registry’s February Quick Question asking how often they feel socially isolated due to their or their loved one’s symptoms from a frontotemporal degeneration (FTD) disorder.
How often do you feel socially isolated due to your or your loved one's FTD symptoms?
629 people answered the FTD Disorders Registry’s February Quick Question asking how often they feel socially isolated due to their or their loved one’s symptoms from a frontotemporal degeneration (FTD) disorder.
The majority of the respondents indicated that they felt socially isolated often (38%) or sometimes (30%). The next highest category were those who reported always feeling socially isolated (15%).
People diagnosed with an FTD disorder and their care partners often experience profound social isolation due to a combination of communication difficulties, behavioral changes, and societal stigma. As FTD disorders progress, individuals may struggle with speech and language, making everyday interactions challenging and frustrating. Behavioral symptoms, such as apathy, impulsivity, and personality changes, can lead to misunderstandings and strained relationships with family, friends, and community members.
FTD disorders typically affect people at a younger age, disrupting careers, social circles, and family dynamics when peers are still engaged in work and social activities. Many care partners also experience isolation as the demands of caregiving increase and social networks shrink due to the stigma and lack of awareness surrounding FTD disorders. Support systems may be inadequate or unavailable, leaving both individuals diagnosed and their caregivers feeling disconnected and unsupported. This combination of factors creates a cycle of isolation that significantly impacts mental and emotional well-being.
Demographics
Spouses answering on behalf of a person diagnosed with an FTD disorder were the largest category of respondents (34%), We also received a large number of responses from people diagnosed with an FTD disorder answering for themselves (22%) and spouses answering for themselves (16%).
We received input on this Quick Question from all stages of the FTD journey. The largest group were those in the middle stages of FTD (39%), but we also received input from those whose FTD-diagnosed loved one had already passed away (24%), those in the late-stage of FTD (21%), and those newly diagnosed (15%).
The majority of respondents to this Quick Question were female (67%). 33% were male. Five people did not identify their gender. Answers came from around world with respondents reporting in from 20 countries and 47 states.
Together we can find a cure for ftd
The FTD Disorders Registry is a powerful tool in the movement to create therapies and find a cure. Together we can help change the course of the disease and put an end to FTD.
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