Tjokrowijoto Priscilla, Beard Clare, Stange Debbie, D'Cunha Nathan M, Cartwright Jade, Moylan Naomi, Withall Adrienne, Draper Brian, Scott Theresa, Irish Muireann, Lewis Robyn, Atkins Kelly, Goodlet Claire, Burton Elissa, Cvejic Rachael, Glennen Karen, Schweitzer Daniel, Cations Monica, Loi Samantha M
Neuropsychiatry Centre, Royal Melbourne Hospital, Parkville, VIC, Australia.
College of Education, Psychology and Social Work, Flinders University, Adelaide, SA, Australia.
Alzheimers Dement. 2025 Aug;21(8):e70538. doi: 10.1002/alz.70538.
Diagnosis of young-onset dementia (YOD) is often delayed due to atypical presentations and lack of awareness. This study explored diagnostic experiences in Australia.
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.
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.
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.
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.
早发性痴呆（YOD）的诊断常常因症状不典型和认知不足而延迟。本研究探讨了澳大利亚的诊断经验。
本联合解决方案子研究采用了混合方法。调查和焦点小组的对象是澳大利亚各地的早发性痴呆患者、护理人员和临床医生。定量数据采用描述性统计和比较分析，定性数据则进行主题分析。
共有313名参与者，大多数为女性，近一半有实际患病经历。症状出现的平均年龄为55.8岁，诊断时的平均年龄为57.9岁。积极方面包括及时诊断和专科临床医生的参与。临床医生强调全面的病史采集和多方面的诊断方法。研究还指出了地理障碍、诊断方式的差异以及护理人员的教育需求。
本研究突出了诊断时间有所改善，但早发性痴呆知识方面仍存在障碍，且获得护理的公平性不足。提高认知、改善临床医生教育并简化转诊流程至关重要。
澳大利亚早发性痴呆的诊断及时性似乎有所提高。获得护理的可及性和质量各不相同，且没有标准化途径。医疗保健领域和社区对早发性痴呆的认知都不足。全面的病史采集和多方面的诊断方法至关重要。临床医生的敏感度很重要，同时要辅以针对性的诊断教育。
