PRESS & NEWS
Quick Question August 2025 Result:
528 participants responded to the FTD Disorders Registry’s August Quick Question on health insurance coverage.
When asked about health insurance coverage for themselves or their loved one diagnosed with FTD, the majority of respondents reported using Original Medicare (32.1%) or Medicare Advantage (21.3%). Other common forms of coverage included employer-sponsored health insurance (14.2%), individual or family plans (7.3%), and Medicaid (6.3%). Smaller groups reported coverage through TRICARE (3.8%), VA Health Care (3.1%), or being dual-eligible for Medicare and Medicaid (1.6%). A limited number indicated they were uninsured (0.9%) or not sure (1.0%) about their coverage, while 8.9% selected “Other” and specified a different type of insurance.
When asked who is the primary policyholder for the person diagnosed with FTD, the majority (75.0%) reported that the person with FTD is the policyholder. Another 17.1% indicated the person is covered under a spouse or family member’s plan, while 5.3% selected “Other.” A small proportion either indicated they were not sure (1.3%) or did not answer (1.3%).
When asked if their family had experienced any changes in health insurance coverage as a result of an FTD diagnosis, the majority of respondents said no (84.4%). A smaller group reported that they had experienced changes (12.5%), while 14 respondents (2.6%) did not answer.
Of those who had experienced a change, many respondents shared personal stories of why a change was needed. The majority of respondents who shared a story, explained that their insurance changed when either the person diagnosed or their spouse left their job and lost their employer-sponsored insurance.
When asked about challenges accessing services through current insurance, more than half of respondents reported no difficulties (35.2%). Among those who did face challenges, the most commonly cited were in-home care support (12.4%), long-term care services (11.1%), and adult day programs or respite care (8.4%). Others experienced difficulties with brain imaging (7.3%), cognitive or neurological assessments (6.3%), prescription medication coverage (5.4%), genetic counseling or testing (4.5%), mental health services (3.8%), and palliative care or hospice (2.8%). A smaller group (2.4%) selected “Other.”
While most reported they could access services, many respondents shared that there were costs associated with in-home care, medical bills, and co-pays that made them cost prohibitive.
Demographics
Among respondents, the majority were spouses answering on behalf of an FTD-diagnosed person (52%). We also had a good representation from people diagnosed with FTD answering for themselves (23%) and biological family members answering on behalf of a person diagnosed with FTD (18%). In addition, we had responses from biological family members answering for themselves (2%), caregivers answering on behalf of a person diagnosed with FTD (1%), friends answering on behalf of a person diagnosed with FTD (1%), and a few caregivers answering for themselves (0.3%).
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 (41%), but we also received input from those whose FTD-diagnosed loved one had already passed away (21%), those in the late-stage of FTD (22%), and those newly diagnosed (13%).
The majority of respondents to this Quick Question were female (65%). 33% were male. Seven people did not identify their gender. Answers came from around world with respondents reporting in from 19 countries, 43 states, Puerto Rico, and the District of Columbia.
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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