Perin Stephanie, Lai Rhoda, Diehl-Schmid Janine, You Emily, Kurz Alexander, Tensil Maria, Wenz Michael, Foertsch Bettina, Lautenschlager Nicola T
Academic Unit for Psychiatry of Old Age, Department of Psychiatry, The University of Melbourne, Melbourne, Australia.
Department of Psychiatry and Psychotherapy, School of Medicine, Technical University of Munich, Munich, Germany.
Digit Health. 2023 Mar 8;9:20552076231161962. doi: 10.1177/20552076231161962. eCollection 2023 Jan-Dec.
Compared to late life dementia, Young Onset Dementia (YOD) has its own distinct challenges, including a lack of specialised and age-appropriate support services. Carers of people with YOD experience higher levels of psychological and physical symptoms, and lower quality of life. This study (RHAPSODY-Plus) assessed the acceptability and feasibility of combining RHAPSODY (Research to Assess Policies and Strategies for Dementia in the Young; a web-based information and skill-building programme for carers of people with YOD) with individually tailored support sessions with health professionals (a social worker and a clinical psychologist) provided via online videoconferencing.
Participants (n = 20) were informal carers aged over 18 years, who were caring for a person with YOD (either Alzheimer's disease or frontotemporal dementia type). Participants used the RHAPSODY programme for 4 weeks, then attended 2 support sessions. Participants and the health professionals then attended individual feedback sessions. Feedback was collected via open-ended and Likert-style questions.
The majority of carers rated the RHAPSODY-Plus programme as good to very good, demonstrating a high level of acceptability. Positive feedback about the programme included being able to receive personal advice additionally to the information provided in RHAPSODY. The healthcare professionals also thought the programme was acceptable and beneficial for access to support. Some limitations in the feasibility of videoconferencing included network and technical issues and the loss of non-verbal communication.
This online pilot study had a high level of acceptability, demonstrating the potential of an individualised multi-modal intervention for carers of people with YOD which offers opportunities to overcome geographical and service access barriers.
与老年痴呆症相比，早发性痴呆症（YOD）有其独特的挑战，包括缺乏专门的、适合其年龄的支持服务。YOD患者的照料者经历更高水平的心理和身体症状，生活质量较低。本研究（RHAPSODY-Plus）评估了将RHAPSODY（评估青年痴呆症政策和策略的研究；一个为YOD患者照料者提供基于网络的信息和技能培养项目）与通过在线视频会议由健康专业人员（一名社会工作者和一名临床心理学家）提供的个性化支持课程相结合的可接受性和可行性。
参与者（n = 20）为年龄超过18岁的非正式照料者，他们照料一名YOD患者（阿尔茨海默病或额颞叶痴呆类型）。参与者使用RHAPSODY项目4周，然后参加2次支持课程。参与者和健康专业人员随后参加个人反馈会议。通过开放式和李克特式问题收集反馈。
大多数照料者将RHAPSODY-Plus项目评为良好到非常好，显示出高度的可接受性。对该项目的积极反馈包括除了RHAPSODY提供的信息外，还能够获得个人建议。医疗保健专业人员也认为该项目可接受且有助于获得支持。视频会议的可行性存在一些限制，包括网络和技术问题以及非语言交流的缺失。
这项在线试点研究具有高度的可接受性，证明了为YOD患者照料者提供个性化多模式干预的潜力，该干预提供了克服地理和服务获取障碍的机会。
