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

Australian & New Zealand Journal of Psychiatry, 55(9) Up to 10% of cases of dementia emerge prior to 65 years 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 4.7year 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. People with YOD have been subject to and affected by two recent Australian Royal Commissions, the highest commission of enquiry that can be established to investigate matters of public concern: (a) into the Quality and Safety of Aged Care and (b) into Violence, Abuse, Neglect and Exploitation of People with Disability. Neither of these Commissions devoted major attention to the complex needs of people with YOD. Here, we outline eight pressing priorities for research, policy, service and advocacy which, in our view, have significant potential to improve outcomes for people with YOD and their care partners and families.