College of Education, Social Work and Psychology, Flinders University, Adelaide, South Australia, Australia.
School of Psychiatry, UNSW Sydney, Sydney, New South Wales, Australia.
BMC Health Serv Res. 2022 Jan 2;22(1):14. doi: 10.1186/s12913-021-07411-2.
People with young onset dementia (YOD) have unique needs and experiences, requiring care and support that is timely, appropriate and accessible. This relies on health professionals possessing sufficient knowledge about YOD. This study aims to establish a consensus among YOD experts about the information that is essential for health professionals to know about YOD.
An international Delphi study was conducted using an online survey platform with a panel of experts (n = 19) on YOD. In round 1 the panel individually responded to open-ended questions about key facts that are essential for health professionals to understand about YOD. In rounds 2 and 3, the panel individually rated the collated responses in terms of their importance in addition to selected items from the Dementia Knowledge Assessment Scale. The consensus level reached for each statement was calculated using the median, interquartile range and percentage of panel members who rated the statement at the highest level of importance.
The panel of experts were mostly current or retired clinicians (57%, n = 16). Their roles included neurologist, psychiatrist and neuropsychiatrist, psychologist, neuropsychologist and geropsychologist, physician, social worker and nurse practitioner. The remaining respondents had backgrounds in academia, advocacy, or other areas such as law, administration, homecare or were unemployed. The panel reached a high to very high consensus on 42 (72%) statements that they considered to be important for health professionals to know when providing care and services to people with YOD and their support persons. Importantly the panel agreed that health professionals should be aware that people with YOD require age-appropriate care programs and accommodation options that take a whole-family approach. In terms of identifying YOD, the panel agreed that it was important for health professionals to know that YOD is aetiologically diverse, distinct from a mental illness, and has a combination of genetic and non-genetic contributing factors. The panel highlighted the importance of health professionals understanding the need for specialised, multidisciplinary services both in terms of diagnosing YOD and in providing ongoing support. The panel also agreed that health professionals be aware of the importance of psychosocial support and non-pharmacological interventions to manage neuropsychiatric symptoms.
The expert panel identified information that they deem essential for health professionals to know about YOD. There was agreement across all thematic categories, indicating the importance of broad professional knowledge related to YOD identification, diagnosis, treatment, and ongoing care. The findings of this study are not only applicable to the delivery of support and care services for people with YOD and their support persons, but also to inform the design of educational resources for health professionals who are not experts in YOD.
患有早发性痴呆症（YOD）的人有独特的需求和体验，需要及时、适当和便捷的护理和支持。这依赖于健康专业人员对 YOD 有足够的了解。本研究旨在确定 YOD 专家对健康专业人员了解 YOD 所必需的信息的共识。
采用在线调查平台对 YOD 专家（n=19）进行了一项国际 Delphi 研究。在第一轮中，专家小组分别对健康专业人员了解 YOD 所必需的关键事实的开放性问题做出了回答。在第二轮和第三轮中，专家小组分别根据其重要性对综合答复进行了评分，此外还对来自痴呆症知识评估量表的选定项目进行了评分。使用中位数、四分位距和将该陈述评为最重要级别比例的方法计算每个陈述达到的共识水平。
专家组主要由现任或退休临床医生组成（57%，n=16）。他们的角色包括神经科医生、精神科医生和神经精神科医生、心理学家、神经心理学家和老年心理学家、医生、社会工作者和护士从业者。其余的受访者具有学术背景、宣传背景或其他领域的背景，如法律、行政、家庭护理或失业。专家组对 42 项（72%）他们认为健康专业人员在为 YOD 患者及其照顾者提供护理和服务时应了解的重要陈述达成了高度到非常高的共识。重要的是，专家组一致认为，健康专业人员应该意识到 YOD 患者需要适合其年龄的护理计划和住宿选择，这些计划和选择应采用全家庭方法。在识别 YOD 方面，专家组一致认为，健康专业人员应该知道 YOD 的病因多种多样，与精神疾病不同，并且具有遗传和非遗传因素的组合。专家组强调了健康专业人员了解专门的多学科服务的重要性，无论是在诊断 YOD 还是提供持续支持方面。专家组还一致认为，健康专业人员应意识到需要进行社会心理支持和非药物干预来管理神经精神症状。
专家组确定了他们认为健康专业人员了解 YOD 所必需的信息。所有主题类别都达成了一致，这表明与 YOD 识别、诊断、治疗和持续护理相关的广泛专业知识非常重要。本研究的结果不仅适用于为 YOD 患者及其照顾者提供支持和护理服务，也适用于为非 YOD 专家的健康专业人员设计教育资源。
