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Frontotemporal dementia is a group of progressive disorders that can affect behavior, language and movement, often before memory problems become prominent. Most cases have no identified genetic cause, and there is no cure; care focuses on managing symptoms and supporting patients and families. In October 2025, the Association for Frontotemporal Degeneration expanded its recommendation that everyone diagnosed with FTD be offered genetic counseling and testing.
Frontotemporal dementia (FTD) affects brain regions involved in behavior, judgment, emotion and language, and its early symptoms can be mistaken for psychiatric or personal problems. An updated recommendation from the Association for Frontotemporal Degeneration (AFTD), reported by Being Patient, says everyone diagnosed with FTD should be offered genetic counseling and testing, regardless of family history; the change may help patients and families understand whether an inherited mutation is involved.
FTD is a group of progressive brain disorders in which nerve cells in the frontal and temporal lobes are damaged and affected regions shrink. Symptoms vary, but commonly involve behavior and personality changes, difficulty communicating, or problems with movement. Symptoms often begin between ages 40 and 65, although onset can be earlier or later. The AFTD estimates that 50,000 to 60,000 people in the United States live with FTD; the report says the true number may be higher because diagnosis is difficult.
The most common form, behavioral variant FTD, can involve impulsivity, poor judgment, apathy, repetitive behavior, changed eating habits or reduced empathy. Primary progressive aphasia affects language: speech may become slow and halting, or a person may lose understanding of words and struggle to name familiar objects. Some related FTD disorders cause stiffness, coordination and balance problems, falls or swallowing difficulties. FTD can also occur alongside amyotrophic lateral sclerosis (ALS).
There is no single known cause for most cases. Researchers have linked FTD to abnormal protein buildup, particularly tau and TDP-43, but the underlying cause remains unknown in many people. The AFTD says about 40 percent of people with FTD have a family history of the disease or related conditions, while about 20 percent have an identifiable genetic cause. The figures describe different measures and do not mean that everyone with a family history carries a known mutation.
Why Earlier Recognition Matters
FTD can affect people during working and family-raising years, and its early behavioral symptoms may be misunderstood. A 2025 study of 609 people with behavioral variant FTD, as described in the report, found about one in three had received a psychiatric diagnosis before their FTD diagnosis; researchers said 13 percent had been incorrectly diagnosed with a psychiatric condition, most commonly depression. These findings concern the study participants and should not be read as rates for all people experiencing behavioral changes.
Delayed recognition can leave patients and families without an explanation for changes in behavior, communication or movement. The expanded AFTD recommendation gives diagnosed people an opportunity to discuss genetic risks with a qualified counselor, including the limits and personal implications of testing. Testing may inform family conversations, but it does not establish when symptoms will develop or provide a cure.
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How FTD Is Inherited
Three genes account for most genetic cases cited in the report: MAPT, associated with tau; GRN, associated with progranulin and TDP-43; and C9orf72, which is linked to both FTD and ALS. When a disease-causing mutation in these genes is inherited in an autosomal dominant pattern, each child of a mutation carrier has a 50 percent chance of inheriting the mutation. Inheriting a mutation does not always mean a person will develop symptoms.
The report says the AFTD expanded its recommendation in October 2025 to offer genetic counseling and testing to everyone diagnosed with FTD, even without a known family history. Genetic counseling can help explain what a test may and may not reveal. The decision is personal: the report describes a family member who initially chose not to learn whether she had inherited a mutation, then later underwent testing.
““It was strange behavior for a man who was 29, but as odd as it was, it didn’t lead me to think of calling his primary care physician because it didn’t seem like a medical issue.””
— Katie Brandt, speaking to Being Patient
What Diagnosis and Testing Can’t Settle
FTD remains difficult to diagnose, and symptoms can overlap with psychiatric conditions and other neurological disorders. The report does not detail a single diagnostic test or provide a full account of how clinicians distinguish FTD from other causes; evaluation should be handled by qualified health professionals.
For most cases, the cause is not identified. Genetic testing can find some disease-associated mutations, but the report cautions that inheriting a mutation does not guarantee symptoms will develop. It also does not describe a treatment that stops or reverses FTD. The prevalence estimates and study findings cited here have the limits of their source and study populations.
Care and Genetic Counseling
People concerned about changes in behavior, language or movement can discuss them with a qualified health professional, who can assess possible causes and determine whether specialist evaluation is appropriate. For someone diagnosed with FTD, the AFTD recommendation is to offer genetic counseling and testing; patients and families can discuss whether testing fits their circumstances and what results could mean for relatives.
Care is focused on managing symptoms and supporting the person and their caregivers. The report does not specify a standard treatment plan or a forthcoming therapy milestone. Further developments will depend on clinical care and research; no new treatment approval or cure is announced in this report.
Key Questions
What is frontotemporal dementia?
FTD is a group of progressive brain disorders affecting areas involved in behavior, emotion, judgment and language. Some related disorders also affect movement.
What are common early symptoms?
Symptoms can include personality or behavior changes, reduced empathy, impulsivity, repetitive behavior, or gradual difficulty speaking and understanding words. Symptoms differ by the brain regions affected and may be mistaken for other conditions.
Is FTD always inherited?
No. Most cases do not have an identified genetic cause. The AFTD figures cited in the report say about 40 percent of people with FTD have a family history, while about 20 percent have an identifiable genetic cause.
Does a genetic mutation mean someone will develop FTD?
Not necessarily. The report says inheriting a disease-associated mutation does not always mean symptoms will develop. A genetic counselor can explain the implications and limits of testing.
Can FTD be cured?
The source report does not identify a cure or a treatment that stops FTD. Care focuses on managing symptoms and supporting patients and families; treatment decisions should be discussed with qualified health professionals.
Source: rss
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