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Family speakers detail diagnostic delays, financial strain and losses from young‑onset FTD
Summary
Two AFTD ambassadors described personal experiences: one recounted a father misdiagnosed and denied services, the other described a daughter diagnosed at 29 whose family lost income and caregiving time; both urged better recognition and services.
Two family speakers described the personal and financial toll of young‑onset frontotemporal degeneration and urged the council to expand education and access to services. Dawn O'Gara recounted her father's experience with behavioral‑variant FTD, saying age‑based services were not available and that staff treating him like other dementia patients sometimes worsened his distress. She asked the council to ensure equitable access to dementia services regardless of age or specific diagnosis and to expand clinician education on FTD.
Dawn Kirby, an AFTD ambassador from Illinois, described a daughter's diagnostic journey: misdiagnosis and psychiatric hospitalization, a Mayo Clinic diagnosis of behavioral‑variant FTD at age 29, and a family that had to quit jobs and refinance mortgages to provide care. Kirby said her daughter later died at age 33 and urged the council to recognize young‑onset cases so families do not lose valuable time because of misdiagnosis.
