Frontotemporal Dementia: Understanding FTD and Its Impact

Frontotemporal Dementia (FTD), also known as Frontotemporal Lobar Degeneration (FTLD), is precisely how it sounds — it affects the frontal and temporal lobes of the brain. It is the second leading cause of dementia (Koumasopoulos E, 2024) and a second causation in early-onset dementia (Barbosa BJAP, 2024). It can also be misdiagnosed as Alzheimer's Disease, which can cause treatment to be delayed (Agnès Pérez-Millan, 2024). Unlike Alzheimer's, which primarily affects more women than men, FTD can affect older men and women equally (Agnès Pérez-Millan, 2024).

Genetics appear to play a significant role in FTD. A mutation in the gene CCNF has been linked to the degeneration of the frontal and temporal lobes (You F-L, 2023). There is also the protein tau, found at the end of axons and aiding in stabilizing microtubules, and the protein TDP-43, which aids in the function of RNA (Association A., 2025). If these structures break down, it can cause FTD. These proteins can no longer keep their shape and begin to deteriorate — proteins work because of their shape, and if they lose it, everything falls apart. Research by Bussy A et al. (2023) supports this, particularly regarding the protein tau, noting a large volume decrease in the amygdala, which regulates emotions.

Some criteria must be met before a diagnosis of FTD. There are three major behavioral indicators. The first is a change in behavior — such as risky behavior, socially inappropriate conduct, impulsivity, and compulsiveness. The second is indifference, which can also present alongside depression, anxiety, stress, and lack of motivation. The third is the loss of sympathy and empathy (DSM-5-TR, 2022). Assessment tools include the Montreal Cognitive Assessment and the Mini-Mental State Examination, which test cognitive and language functions as well as motor skills. MRIs are also commonly used.

The symptoms of FTD, according to the DSM-5-TR, include trouble understanding language — even something as simple as a greeting. Difficulty performing normal routines or tasks around the house. Forgetfulness, trouble remembering and processing information, and difficulty planning. Making everyday decisions becomes difficult, as does recalling events. Risky and socially inappropriate behavior, impulsivity, and compulsiveness are also common. It becomes difficult for the individual to hold down a job. Other symptoms include depression, anxiety, stress, lack of motivation, and the loss of sympathy and empathy. FTD also affects memory and motor functions. Symptoms usually appear between the ages of 45 and 64 (Seltman RE, 2012).

There is also shrinkage in the frontal and temporal areas of the brain, resulting in deterioration of motor skills and language function. A case study of a 59-year-old man showed that within 5 years, a decline in cognition began. Within 6 months his family had to take care of him. He became very aggressive and could no longer recognize family members. A cognitive assessment — the Mini-Mental State Examination (MMSE) — scored him at 17 out of 30, suggesting significant cognitive decline (a score of 25–30 is considered normal). An MRI revealed frontotemporal shrinkage, with more pronounced right temporal atrophy. He was initially misdiagnosed with Alzheimer's Disease, requiring a change in medications and the addition of occupational therapy (Barbosa BJAP, 2024).

FTD is often mistaken for Alzheimer's Disease, and there is a risk of false positives. In one study of 100 patients, 34 were true-positive and 66 were false-positive, largely due to neuroimaging being misread — particularly nuclear imaging and PET scans (Flavell J, 2025). However, by using neuroimaging and fluid biomarkers together, clinicians can better distinguish FTD from Alzheimer's. MRI has shown an accuracy rate of about 80% in distinguishing the two conditions. Research is also finding more volume loss in the right side of the temporal lobe than previously thought (Alsemari, 2024).

FTD doesn't just affect the person who has it — it profoundly impacts caregivers as well. FTD causes dramatic personality changes, and caregivers often find themselves struggling with stress, depression, and feelings of being overwhelmed. They watch their loved one go through mood changes such as aggression and a loss of empathy. FTD patients may forget who their family members are entirely. In one study, patients with FTD ranged in age from 59 to 74, while caregivers ranged from 53 to 64. More men had FTD (61%) and more women were caregivers (73%). One caregiver described their spouse: "He doesn't hug anyone, not even family. And they don't seem upset when someone they know passes away or becomes sick. There is just no emotion there at all" (Fisher, 2024). This lack of empathy is caused by deterioration of the premotor cortex, whose neurons help us use appropriate emotional responses to the outside world.

A documentary called "Planning for Hope: Living with Frontotemporal Disease" (released November 6, 2011) offers a powerful look at both those suffering from FTD and their caretakers. In the documentary, FTD was initially misdiagnosed as stress, depression, bipolar disorder, and several other mental illnesses. Many of those with FTD were not elderly — a lot were in their early 40s to 60s. One woman had lost nearly 40–50% of her IQ. Doctors in the documentary noted that PET scans are superior to MRIs for detecting FTD, as they show cell deterioration — yet PET scans are often overlooked by many physicians.

Hopefully, a cure can eventually be found. There has been positive progress with MAO-A inhibitors (Adler G, 2003), which have been able to reduce some symptoms such as aggressiveness, depression, and anxiety. It is still difficult to diagnose FTD because there are no definitive molecular biomarkers. Treatments exist, but there is no guarantee they will work, and outcomes depend on what stage the individual is in (Benussi A, 2023). The road ahead is challenging, but research continues to advance our understanding of this devastating disease.