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J Intellect Disabil. 2018 Jan 1:1744629517751817. doi: 10.1177/1744629517751817. [Epub ahead of print]

Consensus statement of the International Summit on Intellectual Disability and Dementia on valuing the perspectives of persons with intellectual disability.

Author information

1
University of Stirling, Scotland.
2
University of Illinois at Chicago, USA.
3
Winnserv Inc., Canada.
4
Family Advocate, USA.
5
University of the West of Scotland, Scotland.
6
Charles University, Czech Republic.

Abstract

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.

KEYWORDS:

Down syndrome; dementia; intellectual disability; personal perspectives; self-advocacy

PMID:
29343166
DOI:
10.1177/1744629517751817

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