Cadwallader Claire J, Velakoulis Dennis, Loi Samantha M
Neuropsychiatry, Royal Melbourne Hospital, Parkville, VIC 3050, Australia.
The Turner Institute for Brain and Mental Health, Monash University, Clayton, VIC 3168, Australia.
Brain Sci. 2023 Oct 30;13(11):1529. doi: 10.3390/brainsci13111529.
Behaviour changes (BCs) are common in young-onset dementia (YOD). Access to knowledgeable and age-appropriate support services is needed to assist with the appropriate management of BCs. We sought to investigate the types of YOD-related BCs that most commonly require support, the formal services being accessed for support, and the experiences of those seeking support in Australia. We employed a cross-sectional online questionnaire for individuals living with YOD as well as individuals providing informal or formal care for someone with YOD. Thirty-six questionnaire responses were recorded. Of the total sample, 83% reported YOD-related BCs requiring support, the most common being appetite/eating changes, followed by agitation/aggression and apathy/indifference. Seventy-six percent of these individuals had attempted to seek support from a formal service, with Dementia Australia, Dementia Support Australia, and general practitioners most commonly approached. Responses suggested that the support access pathway is suboptimal, with a lack of clarity about what services to approach for support and long wait times. Furthermore, 28% of participants had not gained access to support utilizing non-pharmacological strategies. Individuals who need support for YOD-related BCs demonstrated a high rate of help-seeking from formal support services; however, the support access pathway is slow, is difficult to navigate, and does not result in the best-practice management of BCs. Formal services resourced to provide efficient support with the implementation of behavioural strategies are needed, along with clear, accessible guidelines on the pathway to access them.
行为改变(BCs)在早发性痴呆(YOD)中很常见。需要获得知识渊博且适合年龄的支持服务,以协助对行为改变进行适当管理。我们试图调查最常需要支持的与早发性痴呆相关的行为改变类型、为获得支持而使用的正式服务,以及在澳大利亚寻求支持的人的经历。我们针对早发性痴呆患者以及为早发性痴呆患者提供非正式或正式护理的人员开展了一项横断面在线问卷调查。记录了36份问卷回复。在总样本中,83%报告有与早发性痴呆相关的需要支持的行为改变,最常见的是食欲/饮食改变,其次是激越/攻击行为和冷漠/无动于衷。这些人中有76%曾试图从正式服务机构寻求支持,最常联系的是澳大利亚痴呆症协会、澳大利亚痴呆症支持组织和全科医生。回复表明,获得支持的途径并不理想,对于寻求何种服务支持缺乏明确指引,且等待时间很长。此外,28%的参与者未能通过非药物策略获得支持。需要为与早发性痴呆相关的行为改变获得支持的个人向正式支持服务机构寻求帮助的比例很高;然而,获得支持的途径缓慢、难以操作,并且无法实现对行为改变的最佳管理。需要有资源的正式服务机构,以便在实施行为策略方面提供高效支持,同时还需要有清晰、易于获取的获取这些服务的途径指南。
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