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Clinical Manifestations.

Carrie F Milliard1, Shana G Dodge2, Sweatha Reddy1

  • 1FTD Disorders Registry, King of Prussia, PA, USA.

Alzheimer'S & Dementia : the Journal of the Alzheimer'S Association
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Summary
This summary is machine-generated.

Diagnosing behavioral variant frontotemporal degeneration (bvFTD) is challenging, with most patients experiencing long delays and misdiagnosis. Early recognition and clinician education are crucial for timely bvFTD diagnosis and improved patient outcomes.

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Area of Science:

  • Neurology
  • Neuroscience
  • Psychiatry

Background:

  • Behavioral variant frontotemporal degeneration (bvFTD) presents with behavioral, personality, and executive function changes.
  • bvFTD symptoms overlap with other disorders, often leading to misdiagnosis and delayed treatment.
  • This diagnostic delay causes significant distress for patients and their families.

Purpose of the Study:

  • To investigate the diagnostic journey for individuals with behavioral variant frontotemporal degeneration (bvFTD).
  • To identify challenges, delays, and misdiagnosis rates in obtaining a bvFTD diagnosis.

Main Methods:

  • Utilized the FTD Disorders Registry, a direct-to-participant registry, with a survey on diagnostic experiences.
  • Collected data from 50 participants who specified bvFTD as their diagnosis between May 2024 and January 2025.
  • Included individuals diagnosed, legally authorized representatives, and care partners in the survey.

Main Results:

  • The majority of respondents (76%) waited over a year for a bvFTD diagnosis, with 30% experiencing 3-6 year delays.
  • Over half (52%) were initially misdiagnosed, commonly with depression, anxiety, or mild cognitive impairment.
  • Distressing symptoms reported included mood changes (46%), cognitive/judgment issues (40%), and personality changes (36%).

Conclusions:

  • Diagnostic delays and misdiagnosis are significant issues in behavioral variant frontotemporal degeneration (bvFTD).
  • Findings highlight the need for enhanced clinician education to recognize early bvFTD signs.
  • Improved diagnostic pathways are essential for patients with unexplained behavioral, cognitive, or personality changes.