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Introduction: Diagnosis of young-onset dementia (YOD) is often delayed due to atypical presentations and lack of awareness. This study explored diagnostic experiences in Australia.
Methods: This Joint Solutions sub-study employed a mixed-methods approach. Surveys and focus groups targeted people with YOD, caregivers, and clinicians across Australia. Quantitative data were analyzed using descriptive statistics and comparisons, while qualitative data underwent thematic analysis.
Results: There were 313 participants, mostly female and nearly half representing lived experience. The average age at symptom onset was 55.8 years, and at diagnosis, 57.9 years. Positive aspects included timely diagnoses and involvement of specialized clinicians. Clinicians emphasized comprehensive history-taking and a multifaceted diagnostic approach. Geographical barriers, variations in diagnosis delivery, and caregiver education needs were noted.
Discussion: This study highlights improved diagnostic timelines but ongoing barriers in YOD knowledge and equitable access to care. Raising awareness, improving clinician education, and streamlining referral processes are essential.
Highlights: Timeliness of younger-onset dementia diagnosis appears to have improved in Australia. Access to care varies in availability and quality, with no standardized pathways. Knowledge of younger-onset dementia is lacking in both healthcare and the community. Comprehensive history-taking and a multifaceted diagnostic approach are crucial. Clinician sensitivity is valued, balanced with tailored education on diagnosis.
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http://dx.doi.org/10.1002/alz.70538 | DOI Listing |
Australas Psychiatry
September 2025
Department of Psychological Medicine, School of Medicine, Faculty of Medical and Health Science, The University of Auckland, Auckland, New Zealand.
ObjectivesThere is limited research on entry to aged residential care (ARC) in people living with young-onset dementia (YOD). Most people with YOD eventually require ARC, often in facilities designed for older adults. This study aimed to investigate the time to ARC admission in a previously identified YOD cohort and their health outcomes before and after ARC admission.
View Article and Find Full Text PDFYoung-onset dementia presents unique care challenges that require comprehensive range of allied health interventions. While Australia's National Disability Insurance Scheme serves as the primary post-diagnostic care pathway for accessing these essential services, recent national survey findings reveal significant systemic barriers preventing people with young-onset dementia from obtaining adequate allied health care under this scheme. This perspective article outlines the critical but underrecognised role of allied health professionals in young-onset dementia care management and identifies key access barriers within the NDIS framework, including gaps in public awareness and provider education on young-onset dementia needs, and systemic issues affecting service coordination.
View Article and Find Full Text PDFAust N Z J Psychiatry
September 2025
Neuropsychiatry Centre, Royal Melbourne Hospital, Parkville, VIC, Australia.
J Alzheimers Dis
September 2025
UC Research Institute for Sport and Exercise, University of Canberra, Canberra, ACT, Australia.
BackgroundCurrent physical activity literature does not distinguish between young (dementia diagnosed before 65) and late onset dementia despite differences between these groups such as age, being known to influence physical activity levels.ObjectiveThe primary aim was to compare objective physical activity levels between people with young onset dementia, late onset dementia, and age-matched control participants without dementia.MethodsThis cross-sectional analysis included four groups (young onset dementia [n = 23]; young onset control [n = 782]; late onset dementia [n = 30]; late onset control [n = 918]) of participants aged 49 to 76 (56% male) from the UK Biobank.
View Article and Find Full Text PDFBrain Sci
July 2025
Neurodegenerative Disorders Research Pty Ltd., Perth, WA 6005, Australia; Tel.: +61-8-6317-9472.
Background: The mechanisms by which sporadic young-onset neurodegenerative processes develop are uncertain.
Methods: We have previously proposed that stochastic processes involving sequence changes at a DNA, RNA, or protein level in critical genes and proteins might be important to this process. Further investigation points to the contribution of probabilistic states in other factors involved in neurodegenerative conditions, such as-in the case of young onset Alzheimer's disease-head injury, apolipoprotein ε4 alleles and other elements that, by the interaction of conditional probabilities in these variables, influence the evolution of neurodegenerative conditions.