Loi Samantha M, Tjokrowijoto Priscilla, D'Cunha Nathan M, Cartwright Jade, Moylan Naomi, Cations Monica, Stange Debbie, Withall Adrienne, Atkins Kelly, Bradley Laine, Burton Elissa, Draper Brian, Fitzgerald Amanda, Goodlet Clare, Irish Muireann, Joseph Trish, Kelso Wendy, Lewis Robyn, Poisson Vincent, Pozzebon Margaret, Scott Theresa, Schweitzer Daniel, Torresi Kym, Scovell Angela, Goh Anita, Cvejic Rachael, Glennen Karen, Beard Clare
Neuropsychiatry Centre, The Royal Melbourne Hospital, Parkville, VIC, Australia.
Department of Psychiatry, University of Melbourne, Parkville, VIC, Australia.
Aust N Z J Psychiatry. 2025 Aug;59(8):729-739. doi: 10.1177/00048674251346681. Epub 2025 Jun 24.
Young-onset dementia (YOD) is a dementia where symptom onset occurs at less than 65 years of age. There has been increased recognition of YOD with improved diagnostic assessments and the introduction of the National Disability Insurance Scheme (NDIS). The Joint Solutions project aimed to evaluate the gaps and barriers along the pathway of care in Australia from a range of stakeholder perspectives to investigate access to services from those who have YOD and those who provide care for them.
A cross-sectional quantitative approach was used, with questionnaires designed in consultation with general practitioners (GPs), clinicians, people with YOD, caregivers and community service providers.
313 people responded, including 45% lived experience ( = 33 people with YOD; 105 caregivers), 30% clinicians ( = 7 GPs; = 86 clinicians), and 25% community providers. All states of Australia were represented, with Victoria having the largest proportion of respondents (39%). Time to diagnosis was 12 months from symptom onset for 70% of caregivers. Up to 90% of caregivers reported their family member with YOD had cognitive testing and neuroimaging. Access to age-appropriate post-diagnostic support varied, with 40% of caregivers reporting their family member received allied health and psychological support. There was limited information provided on employment, driving, legal and financial issues. Sixty percent of people with lived experience stated they had difficulties accessing the NDIS.
There is improvement in the diagnosis of YOD but access to and availability of post-diagnostic support varies. More work is needed to improve equity and collaboration between service providers and clinicians and those affected by YOD.
早发性痴呆（YOD）是指症状在65岁之前出现的痴呆症。随着诊断评估的改进以及国家残疾保险计划（NDIS）的引入，早发性痴呆越来越受到关注。联合解决方案项目旨在从一系列利益相关者的角度评估澳大利亚护理路径中的差距和障碍，以调查早发性痴呆患者及其护理人员获得服务的情况。
采用横断面定量研究方法，问卷是在与全科医生（GP）、临床医生、早发性痴呆患者、护理人员和社区服务提供者协商后设计的。
313人做出了回应，其中包括45%有实际经历者（=33名早发性痴呆患者；105名护理人员）、30%临床医生（=7名全科医生；=86名临床医生）和25%社区服务提供者。澳大利亚所有州都有代表参与，其中维多利亚州的受访者比例最高（39%）。70%的护理人员表示，从症状出现到确诊的时间为12个月。高达90%的护理人员报告称，他们患有早发性痴呆的家庭成员接受了认知测试和神经影像学检查。获得适合年龄的诊断后支持情况各不相同，40%的护理人员报告称他们的家庭成员获得了辅助医疗和心理支持。关于就业、驾驶、法律和财务问题的信息有限。60%有实际经历的人表示，他们在获得国家残疾保险计划方面存在困难。
早发性痴呆的诊断有所改善，但诊断后支持的获取和可得性各不相同。需要开展更多工作，以改善服务提供者、临床医生与早发性痴呆患者之间的公平性与协作。
