Recommendations for a gold-standard pathway of care for young-onset dementia

Young-onset dementia, characterised by symptom onset before the age of 65, represents 5% to 10% of all dementias and affects approximately 28,900 people in Australia (AIHW, 2024). It includes a heterogenous group of conditions, each with distinct symptom profiles, progression, and psychosocial impacts. Due to its often atypical presentation, limited awareness among the public and health professionals, and symptom overlap with psychiatric conditions, young-onset dementia is frequently misdiagnosed or diagnosed late (Loi et al., 2022; Tsoukra et al., 2022). For instance, frontotemporal dementia and posterior cortical atrophy present with behavioural/psychiatric symptoms and visual changes, respectively. Even after diagnosis, age-appropriate care options, including respite and accommodation, are lacking.