Consensus statement of the International Summit on Intellectual Disability and Dementia related to end-of-life care in advanced dementia

Philip McCallion1 | Mary Hogan2 | Flavia H Santos3 | Mary McCarron4 | Kathryn Service5 | Sandy Stemp6 | Seth Keller7 | Juan Fortea8 | Kathleen Bishop9 | Karen Watchman10 | Matthew P Janicki11 | and the Working Group of the International Summit on Intellectual Disability and Dementia

End-of-life (McCallion et al 2017) J Appl Res Intellect Disabil. 2017;1–5.

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.

  1. University at Albany, Albany, NY, USA
  2. National Task Group on Intellectual Disabilities and Dememtia Practices, Eliot, ME, USA
  3. University of Minho, Braga, Portugal
  4. Trinity College Dublin, Dublin, Ireland
  5. Nurse Practitioner Consultant, Northampton, MA, USA
  6. Reena Foundation, Toronto, ON, Canada
  7. American Academy of Developmental Medicine and Dentistry, Lumberton, NJ, USA
  8. Catalan Foundation for Down Syndrome, Barcelona, Spain
  9. Geriatrics Consultant, Lee Center, NY, USA
  10. University of Stirling, Stirling, Scotland
  11. University of Illinois at Chicago, Chicago, IL, USA

Correspondence Philip McCallion, Center for Excellence in Aging Services, University at Albany, Albany, NY, USA. Email: pmccallion@albany.edu

Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to End-of-life Care in Advanced Dementia

McCallion, P.1, Hogan, M.2, Santos, F H.3, McCarron, M.4, Service, K.5, Stemp, S.6, Keller, S.7, Fortea, J.8, Bishop, K.9, Watchman, K.,10 Janicki, M.P.11 and the Working Group of the International Summit on Intellectual Disability and Dementia

Abstract

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. The International Summit on Intellectual Disability and Dementia’s report on end-of-life care in advanced dementia provides a synthesis statement which encompasses defining the state of advanced dementia, proposing use of palliative care services (including hospice), and recommending special efforts for enabling advanced directives and advance care planning prior to the extensive progression of dementia. The Summit 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.

This consensus statement was developed as an output from the 2016 International Summit on Intellectual Disability and Dementia, held in Glasgow, Scotland, 13-14 October 2016, and hosted by the University of Stirling and University of the West of Scotland, funded by the RS MacDonald Trust, the Scottish Government, and Alzheimer Scotland. Collaborating sponsors included the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) in the United States and the Rehabilitation Research and Training Center on Developmental Disabilities and Health (RRTCDD), University of Illinois at Chicago. The Summit was composed of individuals and representatives of many international and national organizations with a stake in issues related to adults with intellectual disability affected by dementia. The contents of this statement were partially developed under a grant from the United States Department of Health and Human Services, Administration for Community Living (ACL), National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Grant # 90RT5020-03-00. However, those contents do not necessarily represent the policy of the US Department of Health and Human Services, nor the endorsement by the US federal government. The opinions expressed represent those of the Summit participants and of the NTG.

Authors:
1University at Albany, New York USA
2Family Advocate, Eliot, Maine USA
3 University of Minho, Braga, Portugal
4 Trinity College Dublin, Dublin, Ireland
5 Nurse Practitioner Consultant, Northampton, Massachusetts USA
6Reena Foundation, Toronto, Ontario Canada
7 American Academy of Developmental Medicine and Dentistry, Lumberton, New Jersey USA
8 Catalan Foundation for Down Syndrome, Barcelona, Spain
9Geriatrics Consultant, Lee Center, New York USA
10University of Stirling, Scotland
11University of Illinois at Chicago, Illinois USA

Address for Corresponding Author:
Philip McCallion, Ph.D.
Center for Excellence in Aging Services
RI 383
University at Albany
Albany NY 12222 USA
Email: pmccallion@albany.edu
Telephone: +1 518 442-5347

Accepted for publication in the Journal of Applied Research in Intellectual Disability (1/31/17)

Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to Nomenclature

Janicki, M.P.1, McCallion. P.2, Splaine, M.3, Santos, F.H.4, Keller, S.M.5, Watchman, K.6. (October 2017). Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to Nomenclature. American Association on Intellectual and Developmental Disabilities (AAIDD).

1 University of Illinois at Chicago, USA

2 University at Albany, New York USA

3 Splaine Consulting, Columbia, Maryland USA

4 São Paulo State University, Bauru, Brazil

5 American Academy of Developmental Medicine and Dentistry, Lumberton, New Jersey USA

6 University of Stirling, Scotland

Correspondence Address: Matthew P. Janicki University of Illinois at Chicago Department of Disability and Human Development (MC626) 1640 W. Roosevelt Road Chicago, IL 60608 USA Email: mjanicki@uic.edu

ABSTRACT

A working group of the 2016 International Summit on Intellectual Disability and Dementia was charged to examine the terminology used to define and report on dementia in publications related to intellectual disability (ID). A review of related publications showed mixed uses of terms associated with dementia or causative diseases. As with dementia research in the non-ID population, language related to dementia in the ID field often lacks precision and could lead to a misunderstanding of the condition(s) under discussion; an increasingly crucial issue given the increased global attention dementia is receiving in that field. Most articles related to ID and dementia reporting clinical or medical research generally provide a structured definition of dementia or related terms; social care articles tend toward term use without definition. Toward terminology standardization within studies/reports on dementia and ID, the Summit recommended that a consistent approach is taken that ensures (a) growing familiarity with dementia-related diagnostic, condition-specific, and social care terms (as identified in the working group’s report), (b) creating a guidance document on accurately defining and presenting information about individuals or groups referenced, and (c) that in reports on neuropathologies or cognitive decline or impairment, definitions are used and data include subjects’ ages, sex, level of ID, residential situation, basis for dementia diagnosis, presence of Down syndrome (or other risk conditions), years from diagnosis, and if available, scores on objective measures of changing function.