Research output

Article in Journal

Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to End-of-life Care in Advanced Dementia (Forthcoming/Available Online)

Citation
McCallion P, Hogan M, Santos F, McCarron M, Service K, Stemp S, Keller S, Fortea J, Bishop K, Watchman K & Janicki M (2017) Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to End-of-life Care in Advanced Dementia (Forthcoming/Available Online), Journal of Applied Research in Intellectual Disabilities.

Notes
Additional co-author: the Working Group of the International Summit on Intellectual Disability and Dementia

Abstract
Background 

Adults with intellectual disability are affected by dementia at equivalent and elevated rates, many surviving into advanced age. End of life care and support considerations come into play among these individuals when most are in the advanced stage of dementia. 
Methods 
A preliminary report summarizing available literature and making initial recommendations was developed by a workgroup, reviewed by all conference participants and then was finalized by the workgroup. 
Results 
The International Summit on Intellectual Disability and Dementia produced a report on End of life care in advanced dementia that provides a synthesis statement which encompasses defining the state of advanced dementia, proposes use of palliative care services (including hospice) and recommends special efforts for enabling advanced directives and advance care planning prior to the extensive progression of dementia. The Summit further recommended that when aiding adults with advanced dementia, the following be undertaken: integrative efforts between intellectual disability and palliative care providers, specialized training for carers on end of life care and supports, and involvement of adults with intellectual disability early on in their advance care planning. 
Conclusions 
The Consensus recommendations will ensure greater and more appropriate support at end of life for persons with intellectual disabilities and advanced dementia.

Keywords
dementia; end-of-life; intellectual disability; palliative; person-centered; statement

StatusIn press
AuthorsMcCallion Philip, Hogan Mary, Santos Flavia, McCarron Mary, Service Kathy, Stemp Sandy, Keller Seth, Fortea Juan, Bishop Kathy, Watchman Karen, Janicki Matthew
Publication date online09/05/2017
Date accepted by journal31/01/2017
PublisherWiley-Blackwell
ISSN 1360-2322
LanguageEnglish

Journal
Journal of Applied Research in Intellectual Disabilities

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