Iacono T, Bigby C, Carling-Jenkins R, Torr J
La Trobe Rural Health School, La Trobe University, Bendigo, Victoria, Australia.
J Intellect Disabil Res. 2014 Jun;58(6):521-33. doi: 10.1111/jir.12048. Epub 2013 Apr 30.
Disability staff are being increasingly required to support adults with Down syndrome who develop Alzheimer's disease. They have little understanding of the nature of care required, and may lack input from aged care and dementia services, which lack knowledge of intellectual disability. The aim of this study was to report on the experiences of disability staff in group homes supporting residents with Down syndrome and Alzheimer's disease in relation to their under understanding of what was happening to these residents, their responses to them, and how they felt about their support role.
Disability support staff for nine adults with Down syndrome who had a diagnosis of Alzheimer's disease were interviewed twice, over intervals of 6-9 months. Interviews were transcribed and analysed for themes.
Three key themes emerged - (i) struggling to understand change, (ii) taking each day as it comes, and (iii) he's got a disability and that's our job.
Staff had only limited understanding of how Alzheimer's disease impacted the adults with Down syndrome, their responses to changes were ad hoc, and they used strategies on a trial and error basis. They were committed to providing care, but at the risk of rejecting input and support. The need for collaboration across disability, and aged and disability care was evident to facilitate aging-in-place and planned care transitions.
残疾护理人员越来越多地被要求为患有阿尔茨海默病的唐氏综合征成年人提供支持。他们对所需护理的性质了解甚少，可能缺乏老年护理和痴呆症服务的投入，而这些服务缺乏对智力残疾的了解。本研究的目的是报告集体家庭中的残疾护理人员在支持患有唐氏综合征和阿尔茨海默病的居民方面的经历，包括他们对这些居民所发生事情的理解、对他们的反应以及他们对自己支持角色的感受。
对九名被诊断患有阿尔茨海默病的唐氏综合征成年人的残疾支持人员进行了两次访谈，间隔时间为6 - 9个月。对访谈进行转录并分析主题。
出现了三个关键主题——（i）难以理解变化，（ii）随遇而安，（iii）他有残疾，那是我们的工作。
工作人员对阿尔茨海默病如何影响唐氏综合征成年人的了解有限，他们对变化的反应是临时的，并且他们采用试错的策略。他们致力于提供护理，但有拒绝投入和支持的风险。跨残疾护理、老年护理和残疾护理进行合作的必要性很明显，以促进就地养老和有计划的护理过渡。
