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dc.contributor.authorMcCarron, Maryen_UK
dc.contributor.authorMcCallion, Philipen_UK
dc.contributor.authorWatchman, Karenen_UK
dc.contributor.authorJanicki, Matthew Pen_UK
dc.contributor.authorCoppus, Antoniaen_UK
dc.contributor.authorService, Kathyen_UK
dc.contributor.authorFortea, Juanen_UK
dc.contributor.authorHogan, Maryen_UK
dc.contributor.authorReilly, Evelynen_UK
dc.contributor.authorStemp, Sandyen_UK
dc.description.abstractPurpose of Report: The International Summit on Intellectual Disability and Dementia (Glasgow, Scotland; October 2016) noted that advanced dementia can be categorized as that stage of dementia progression characterized by significant losses in cognitive and physical function, including a high probability of further deterioration and leading to death. The questions before the summit were whether there were similarities and differences in expressions of advanced dementia between adults with intellectual disability (ID) and adults in the general population. Findings: The summit noted challenges in the staging of advanced dementia in people with ID with the criteria in measures designed to stage dementia in the general population heavily weighted on notable impairment in activities of daily living. For many people with an ID, there is already dependence in these domains generally related to the individuals pre-existing level of intellectual impairment, that is, totally unrelated to dementia. Hence, the summit agreed that it is imperative that change is measured from the person’s prior functioning in combination with clinical impressions of decline and of increasing comorbidity including particular attention to late onset epilepsy in people with Down syndrome. It was further noted that quality care planning must recognize the greater likelihood of physical symptoms, comorbidities, immobility, and neuropathological deterioration. Summary: The summit recommended an investment in research to more clearly identify measures for ascertaining advanced dementia, inform practice guidelines to aid clinicians and service providers, and identify additional markers that may help signal decline and progression into advanced dementia among people with various levels of pre-existing intellectual impairment.en_UK
dc.publisherMary Ann Lieberten_UK
dc.relationMcCarron M, McCallion P, Watchman K, Janicki MP, Coppus A, Service K, Fortea J, Hogan M, Reilly E & Stemp S (2018) Quality Care for People with Intellectual Disability and Advanced Dementia: Guidance on Service Provision. Journal of Palliative Medicine, 21 (9).
dc.rightsThis item has been embargoed for a period. During the embargo please use the Request a Copy feature at the foot of the Repository record to request a copy directly from the author. You can only request a copy if you wish to use this work for your own research or private study. Final publication is available from Mary Ann Liebert, Inc., publishers
dc.subjectadvanced dementiaen_UK
dc.subjectDown syndromeen_UK
dc.subjectend of lifeen_UK
dc.subjectintellectual disabilitiesen_UK
dc.subjectquality of careen_UK
dc.titleQuality Care for People with Intellectual Disability and Advanced Dementia: Guidance on Service Provisionen_UK
dc.typeJournal Articleen_UK
dc.rights.embargoreason[Advanced dementia - Manuscript submission.pdf] Publisher requires embargo of 12 months after formal publication.en_UK
dc.citation.jtitleJournal of Palliative Medicineen_UK
dc.type.statusAM - Accepted Manuscripten_UK
dc.description.notesAdditional listed co-author: Advanced Dementia Working of the International Summit on Intellectual Disability and Dementiaen_UK
dc.contributor.affiliationTrinity College, Dublinen_UK
dc.contributor.affiliationUniversity At Albany, State University of New Yorken_UK
dc.contributor.affiliationHealth Sciences Stirlingen_UK
dc.contributor.affiliationUniversity of Illinois at Chicagoen_UK
dc.contributor.affiliationRadboud University Nijmegenen_UK
dc.contributor.affiliationCatalan Foundation for Down Syndromeen_UK
dc.contributor.affiliationDaughters of Charity Disability Support Serviceen_UK
dc.contributor.affiliationReena Foundationen_UK
Appears in Collections:Faculty of Health Sciences and Sport Journal Articles

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