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

Karen Watchman, Matthew P. Janicki, Leslie Udell, Mary Hogan, Sam Quinn, Anna Beránková

Research output: Contribution to journalArticle

3 Citations (Scopus)

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, (c) supporting choice in community-dwelling arrangements and (d) broadening availability of materials for persons with intellectual disability that would promote understanding of dementia.
Original languageEnglish
Pages (from-to)266-280
Number of pages15
JournalJournal of Applied Research in Intellectual Disabilities
Volume23
Issue number2
Early online date17 Jan 2018
DOIs
Publication statusPublished - 1 Jun 2019

Keywords

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

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