Watchman Karen, Janicki Matthew P, Udell Leslie, Hogan Mary, Quinn Sam, Beránková Anna
University of Stirling, Scotland.
University of Illinois at Chicago, USA.
J Intellect Disabil. 2019 Jun;23(2):266-280. doi: 10.1177/1744629517751817. Epub 2018 Jan 17.
The International Summit on Intellectual Disability and Dementia covered a range of issues related to dementia and intellectual disability, including the dearth of personal reflections of persons with intellectual disability affected by dementia. This article reflects on this deficiency and explores some of the personal perspectives gleaned from the literature, from the Summit attendees and from the experiences of persons with intellectual disability recorded or scribed in advance of the two-day Summit meeting. Systemic recommendations included reinforcing the value of the involvement of persons with intellectual disability in (a) research alongside removing barriers to inclusion posed by institutional/ethics review boards, (b) planning groups that establish supports for dementia and (c) peer support. Practice recommendations included (a) valuing personal perspectives in decision-making, (b) enabling peer-to-peer support models, (c) supporting choice in community-dwelling arrangements and (d) broadening availability of materials for persons with intellectual disability that would promote understanding of dementia.
国际智力残疾与痴呆症峰会涵盖了一系列与痴呆症和智力残疾相关的问题，包括受痴呆症影响的智力残疾者个人思考的匮乏。本文反思了这一不足，并探讨了从文献、峰会参与者以及在为期两天的峰会召开之前记录或撰写的智力残疾者经历中收集到的一些个人观点。系统性建议包括强化智力残疾者参与（a）研究的价值，同时消除机构/伦理审查委员会造成的参与障碍；（b）为痴呆症建立支持的规划小组；以及（c）同伴支持。实践建议包括（a）在决策中重视个人观点；（b）启用同伴支持模式；（c）支持社区居住安排中的选择；以及（d）拓宽面向智力残疾者的材料供应，以促进对痴呆症的理解。
