Carling-Jenkins Rachel, Torr Jennifer, Iacono Teresa, Bigby Christine
Centre for Developmental Disability Health Victoria, Monash University, 270 Ferntree Gully Road, Notting Hill, Vic. 3168, Australia.
J Intellect Dev Disabil. 2012 Mar;37(1):54-60. doi: 10.3109/13668250.2011.645473. Epub 2012 Jan 3.
Research addressing the experiences of families of adults with Down syndrome and Alzheimer's disease in seeking diagnosis and gaining support is limited. The aim of this study was to gain a greater understanding of these processes by exploring the experiences of families and carers in supporting people with Down syndrome and Alzheimer's disease who had lived most or all of their lives with family.
Three detailed case studies were created from multiple data sources, and then analysed thematically.
Families of adults with Down syndrome experienced stress and confusion as they negotiated a service system poorly equipped to meet their needs and professionals more focused on longstanding disability than the recent diagnosis of Alzheimer's disease. Such overshadowing led to mismanagement by services.
This research advances understandings of the support needs of people with Down syndrome and Alzheimer's disease and their families. It exposes gaps in the service system.
关于唐氏综合征和阿尔茨海默病成年患者家庭在寻求诊断和获得支持方面经历的研究有限。本研究的目的是通过探索家庭和照料者在支持与家人一起生活了大部分或全部人生的唐氏综合征和阿尔茨海默病患者过程中的经历，来更深入地了解这些过程。
从多个数据源创建了三个详细的案例研究，然后进行主题分析。
唐氏综合征成年患者的家庭在与一个难以满足其需求的服务系统打交道时，以及面对更关注长期残疾而非近期阿尔茨海默病诊断的专业人员时，经历了压力和困惑。这种忽视导致了服务的管理不善。
本研究推进了对唐氏综合征和阿尔茨海默病患者及其家庭支持需求的理解。它揭示了服务系统中的差距。
