Beard Clare, Tjokrowijoto Priscilla, Stange Debbie, D'Cunha Nathan M, Moylan Naomi, Cations Monica, Withall Adrienne, Cartwright Jade, Loi Samantha M
College of Education, Psychology and Social Work, Flinders University, Adelaide, SA, Australia.
Neuropsychiatry Centre, Royal Melbourne Hospital, Parkville, VIC, Australia.
Dementia (London). 2025 Jul 12:14713012251360600. doi: 10.1177/14713012251360600.
People with young-onset dementia in Australia face significant challenges due to inconsistencies in diagnostic and post-diagnostic care. These challenges stem from a general lack of knowledge of young-onset dementia, limited age-appropriate supports, and inconsistent services that are available for people with young-onset dementia. The lack of awareness, insufficient professional training, and inadequacies in services exacerbate these challenges, and geographic disparities exist. In 2024, the J project aimed to explore the care experiences of people with young-onset dementia in Australia, highlighting gaps, barriers, and positive aspects of the care pathway This paper presents the emergent themes derived from the project. Using qualitative methodology, we gathered optional free-text data from a pool of 313 survey participants and feedback from 47 focus group participants, including individuals with young-onset dementia, caregivers, general practitioners, and community service providers. A thematic analysis generated six key recurring themes and patterns underscoring the needs of this population. These themes highlight the necessity to (1) increase relating to young-onset dementia; (2) improve services to manage the associated with young-onset dementia; (3) ensure sufficient are in place to provide necessary support and preparedness; (4) enhance the of age-relevant services; (5) consider the impact young-onset dementia has on personal ; (6) reduce to obtaining support. These findings emphasise the urgent need for a nationally consistent care pathway to address young-onset diagnostic and post-diagnostic care. A comprehensive framework must be developed, offering a diverse range of resources and services tailored to meet the unique needs of individuals diagnosed with young-onset dementia and their families.
由于诊断和诊断后护理的不一致，澳大利亚早发性痴呆症患者面临重大挑战。这些挑战源于对早发性痴呆症普遍缺乏了解、适合该年龄段的支持有限，以及为早发性痴呆症患者提供的服务不一致。意识的缺乏、专业培训不足和服务不完善加剧了这些挑战，而且还存在地理差异。2024年，J项目旨在探索澳大利亚早发性痴呆症患者的护理经历，突出护理路径中的差距、障碍和积极方面。本文介绍了从该项目中得出的新出现的主题。我们采用定性方法，从313名调查参与者那里收集了可选的自由文本数据，并从47名焦点小组参与者那里收集了反馈，这些参与者包括早发性痴呆症患者、护理人员、全科医生和社区服务提供者。一项主题分析产生了六个反复出现的关键主题和模式，突出了这一人群的需求。这些主题强调有必要：(1) 增加对早发性痴呆症的了解；(2) 改善服务以管理与早发性痴呆症相关的症状；(3) 确保有足够的资源到位，以提供必要的支持和准备；(4) 提高与年龄相关服务的可及性；(5) 考虑早发性痴呆症对个人身份的影响；(6) 减少获得支持的障碍。这些发现强调迫切需要制定全国统一的护理路径，以解决早发性诊断和诊断后护理问题。必须制定一个全面的框架，提供各种资源和服务，以满足被诊断患有早发性痴呆症的个人及其家庭的独特需求。
