Please use this identifier to cite or link to this item: http://hdl.handle.net/1893/25979
Appears in Collections:Faculty of Health Sciences and Sport Journal Articles
Peer Review Status: Refereed
Title: Consensus Statement of the International Summit on Intellectual Disability and Dementia on Valuing the Perspectives of Persons with Intellectual Disability (Forthcoming/Available Online)
Author(s): Watchman, Karen
Janicki, Matthew
Udell, Leslie
Hogan, Mary
Quinn, Sam
Berankova, Anna
Contact Email: karen.watchman@stir.ac.uk
Keywords: dementia
Down syndrome
intellectual disability
personal perspectives
self-advocacy
Issue Date: 17-Jan-2018
Citation: Watchman K, Janicki M, Udell L, Hogan M, Quinn S & Berankova A (2018) Consensus Statement of the International Summit on Intellectual Disability and Dementia on Valuing the Perspectives of Persons with Intellectual Disability (Forthcoming/Available Online), Journal of Intellectual Disabilities. https://doi.org/10.1177/1744629517751817.
Abstract: The International Summit on Intellectual Disability and Dementia held in Scotland in 2016 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 paper reflects on this deficiency and explores some of the personal perspectives gleaned from the literature, from Summit attendees, and from the experiences of persons with intellectual disability recorded or scribed in advance of the two-day Summit meeting. Omission of the perspectives of persons with intellectual disability in both policy and practice limits understanding of the experience of dementia. It leads to an overreliance on proxy reporting; something considered by the Summit to be a backwards step in person-centred work. The Summit recognised that the perspectives of persons with intellectual disability must be considered whenever interventions and supports are discussed with planning required at an earlier stage for advance directives that guide medical treatment, and for advice or counselling around relationships, the continuity of social networks, and when securing dementia-friendly housing. 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 services and supports for dementia, and (c) peer support efforts that help adults with intellectual disability who are affected by dementia (either directly or indirectly). 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) wider availability of materials for persons with intellectual disability that would promote understanding of dementia.
DOI Link: 10.1177/1744629517751817
Rights: Watchman K, Janicki MP, Udell L, Hogan M, Quinn S, Berankova A, Consensus statement of the International Summit on Intellectual Disability and Dementia on valuing the perspectives of persons with intellectual disability, Journal of Intellectual Disabilities (Forthcoming). Copyright © The Author(s) 2018. Reprinted by permission of SAGE Publications. The formal publication is available at: https://doi.org/10.1177/1744629517751817

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