ERIC Number: EJ1217009
Record Type: Journal
Publication Date: 2019-Jun
Pages: 15
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1744-6295
EISSN: N/A
Consensus Statement of the International Summit on Intellectual Disability and Dementia on Valuing the Perspectives of Persons with Intellectual Disability
Watchman, Karen; Janicki, Matthew P.; Udell, Leslie; Hogan, Mary; Quinn, Sam; Beránková, Anna
Journal of Intellectual Disabilities, v23 n2 p266-280 Jun 2019
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.
Descriptors: Dementia, Intellectual Disability, Conferences (Gatherings), Barriers, Inclusion, Ethics, Planning, Decision Making, Peer Relationship, Down Syndrome, Self Advocacy, Organizations (Groups), Expressive Language, Caregiver Role, Helping Relationship, Housing, Friendship, Foreign Countries, Adults
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Publication Type: Journal Articles; Reports - Descriptive
Education Level: N/A
Audience: N/A
Language: English
Sponsor: National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) (DHHS/ACL)
Authoring Institution: N/A
Identifiers - Location: United Kingdom
Grant or Contract Numbers: 90RT50200300