A call to action for the improved identification, diagnosis, treatment and care of people with young onset dementia

Up to 10% of cases of dementia emerge prior to 65years of age, equating to more than 27,000 Australians living with young onset dementia (YOD) (Brown et al., 2017). The aetiology of YOD is diverse and includes common dementias (e.g.
Alzheimer’s disease, frontotemporal dementia) and a range of neurological disorders and substance and injuryrelated disabilities. An average 4.7- year delay in diagnosis occurs partly because early symptoms can differ from the typical late-life presentation (Loi et al., 2020). People with YOD and their families face significant distress and burden owing to their familial, professional and financial responsibilities at the time of symptom onset (Cations et al., 2017). Although symptoms emerge before age 65, people with YOD typically reach age 65 and beyond with their condition and have complex health needs. This marginalises the group at the intersection of the health, disability and aged care systems.