Nearly 70 per cent of frontotemporal dementia cases are misdiagnosed, according to a study by Mater Hospital Brisbane’s Memory and Cognitive Disorders Clinic.
Led by Mater Research Professor Peter Nestor, the study involved 100 patients who were referred to the tertiary clinic, a specialist service for atypical and young-onset dementias.
Prof Nestor said that the behavioural variant of frontotemporal dementia (bvFTD) is a particularly challenging diagnosis due to overlapping symptoms with psychiatric and other neurological conditions.
“It can be an unstable diagnosis, as patients themselves lack insight into the behavioural changes that develop with bvFTD,” he said.
“This means that physicians need to rely on patients whose symptom reporting may also be unreliable due to lack of experience with the condition.
“Our study aimed to identify the clinical factors that contribute to misdiagnoses of bvFTD by specialist physicians."
After analysing 100 patients with suspected or confirmed bvFTD from specialist physicians such as psychiatrists, neurologists and geriatricians, the research team found only 34 of the 100 patients were true-positive for bvFTD and 66 were false positive.
Dr Joshua Flavell, a psychiatrist who is currently completing his PhD through Queensland Brain Institute - The University of Queensland said the study showed that patients with prior psychiatric histories were more likely to be misdiagnosed.
“Psychiatric history was regularly downplayed by both patients and informants, making it difficult for physicians to understand how to place particular weight on this part of the diagnostic puzzle,” Dr Flavell said.
“Misdiagnosis can result in patients receiving inappropriate treatments, potentially leading to unnecessary medications, delays in proper care, and increased emotional distress for families. “
Among the false positives, the research team found that 45 had a singular, clear justification for suspecting the condition while the remaining 21 had multiple reasons that contributed to the incorrect diagnosis. The most common reasons for misdiagnosis were attributed to an over-interpretation of neuroimaging and neuropsychological assessments.
“This high rate of misdiagnosis highlights the complexities in differentiating bvFTD from psychiatric and other neurological conditions,” Prof Nestor said.
“Physicians must remain vigilant about all of the diagnostic criteria to ensure that few patients are misdiagnosed.”
The study was conducted at the Memory and Cognitive Disorders Clinic at Mater Hospital Brisbane and Queensland Brain Institute at The University of Queensland. The full paper, titled “Factors associated with true-positive and false-positive diagnoses of behavioural variant frontotemporal dementia in 100 consecutive referrals from specialist physicians” was originally published in the European Journal of Neurology in January 2025.
