Abstract:
Background. The diagnosis of young-onset dementia presents significant challenges both for the person and their families, which often differ from the challenges faced with late-onset dementia. Evidence of the experience of service users and carers tends to reveal a negative appraisal of the care received, citing longer diagnosis times, poor clinician knowledge and lack of age-appropriate care. However, evidence looking into staff experiences of supporting someone with young-onset dementia is relatively scarce. The aim of this study was to explore the experiences and reflections of health and social care staff who support people with young-onset dementia within older adult mental health services, and whether their knowledge of the systems they work in could reveal the existence of barriers or facilitators to young-onset dementia care. Methods. Health and social care professionals working with people and carers with young-onset dementia across England were remotely interviewed between September and December 2021. Data were analysed using inductive thematic analysis. Findings. Sixteen staff members were interviewed. Three themes were constructed with six sub-themes. The first theme related to the perception of greater complexity around young-onset dementia support. The second theme describes staff fears around their ability to effectively support people with young-onset dementia, including the perception that young-onset dementia requires specialist input. The final theme describes systemic and structural inefficiencies which provide additional challenges for staff. Conclusions. Providing effective support for people with young-onset dementia and their families requires adjustments both within the clinician role and mental health services. Staff considered young-onset dementia support to be a specialist intervention and felt the services they work for are suited to generic mental health and dementia provision. Findings are discussed with recommendations relating to developing a standardised model of dementia care for young-onset dementia which recognises and responds to the unique experiences of young-onset dementia.
摘要:
背景。青年型痴呆的诊断对患者及其家庭都提出了重大挑战,这通常不同于迟发性痴呆所面临的挑战。服务使用者和照顾者经验的证据往往显示对所接受护理的负面评价,以诊断时间较长为例,临床医生知识不足,缺乏适合年龄的护理。然而,研究员工支持年轻痴呆症患者的经验的证据相对较少。这项研究的目的是探索健康和社会护理人员的经验和反思,他们支持老年人精神卫生服务中的年轻痴呆症患者。以及他们对所工作系统的了解是否可以揭示出年轻痴呆症护理的障碍或促进因素的存在。方法。在2021年9月至12月之间,与英格兰年轻痴呆症患者和护理人员一起工作的健康和社会护理专业人员接受了远程采访。采用归纳专题分析法对数据进行分析。调查结果。采访了16名工作人员。构建了三个主题,其中六个子主题。第一个主题涉及对年轻发病的痴呆症支持的更大复杂性的看法。第二个主题描述了员工对有效支持年轻痴呆症患者的能力的恐惧,包括认为年轻的痴呆症需要专家的投入。最后一个主题描述了系统和结构上的低效率,这给工作人员带来了额外的挑战。Conclusions.为年轻痴呆症患者及其家人提供有效的支持需要在临床医生角色和心理健康服务方面进行调整。工作人员认为对年轻痴呆症的支持是一种专业干预措施,并认为他们所服务的服务适合于一般的心理健康和痴呆症的提供。讨论了研究结果,并提出了有关开发针对年轻发作性痴呆症的标准化痴呆症护理模型的建议,该模型可识别并响应年轻发作性痴呆症的独特经历。