The objective of this exploratory analysis was to assess which aspects of Frontotemporal Degeneration (FTD) disease burden were reported more frequently by caregivers when compared to reports by individuals diagnosed with FTD.

As the most common form of dementia affecting persons under age 60, FTD can cause financial, career, and household challenges for caregivers that are unique from late-onset dementia. Additionally, FTD causes loss of insight that can give patients a different impression of their burden of disease.  To further understand FTD patient and caregiver experiences, a subset of data collected in the FTD Insights Survey was analyzed.

The FTD Insights Survey was developed and executed by the Association for Frontotemporal Degeneration (AFTD) and the FTD Disorders Registry. Reported impact to quality of life (QoL), especially with respect to FTD “symptoms affecting activities with others” were assessed in those who identified “I am or was a primary or secondary caregiver for someone with FTD” vs. responders who were diagnosed with FTD. Pearson’s chi-square test was used to assess association among variables. Cramer’s V was used to assess association strength, nominal p-values were reported.

A greater percentage of caregivers reported “loss of financial security” and “loss of important family relationships” as impacted QoL indicators. The strongest effect size observed was loss of financial security (nominal p<0.001, V=0.358). A greater percentage of caregivers reported impact to all “symptoms affecting activities with others” indicators. The strongest effect size observed was impact to intimacy with a spouse or partner (nominal p<0.001, V=0.365).

Caregivers more frequently acknowledged certain QoL impact indicators, especially “difficulty doing activities with others”, compared to individuals diagnosed with FTD. These data are consistent with reported loss of insight and support the importance of assessing the burden of disease through caregiver reporting.