International Summit Consensus Statement: Intellectual Disability Inclusion in National Dementia Plans

Karen Watchman, PhD, Matthew P. Janicki, PhD, Michael Splaine, MA, Frode K. Larsen, MPH, Tiziano Gomiero, PhD, and Ronald Lucchino, PhD

Source: ID in National Plans


The World Health Organization (WHO) has called for the development and adoption of national plans or strategies to guide public policy and set goals for services, supports, and research related to dementia. It called for distinct populations to be included within national plans, including adults with intellectual disability (ID). Inclusion of this group is important as having Down’s syndrome is a significant risk factor for early-onset dementia. Adults with other ID may have specific needs for dementia-related care that, if unmet, can lead to diminished quality of old age. An International Summit on Intellectual Disability and Dementia, held in Scotland, reviewed the inclusion of ID in national plans and recommended that inclusion goes beyond just description and relevance of ID. Reviews of national plans and reports on dementia show minimal consideration of ID and the challenges that carers face. The Summit recommended that persons with ID, as well as family carers, should be included in consultation processes, and greater advocacy is required from national organizations on behalf of families, with need for an infrastructure in health and social care that supports quality care for dementia.

NTG Caregivers Newsletter on ID and Dementia Practices (Volume 1, Issue 1)

Welcome to the first issue of the NTG Caregiver News (Volume 1 Issue 1) March 2017. This publication has grown out of the NTG’s Family Caregiver Online Support Group for those who are caring for, or have cared for, loved ones with Alzheimer’s and intellectual disabilities.

Once each month, we open the airwaves to share what is happening in our lives and with our loved ones. To keep the group effective for support to the families, we limit participation to those who have loved ones with dementia or are direct caregivers. As we identify topics we would like more information about, we invite specific professionals to lead our conversation. Upcoming issues of this newsletter will include some of the highlights of those conversations. In addition, watch for links to helpful resources.

This issue includes some general information on intellectual and developmental disabilities and dementias, as well as an introduction to the National Task Group (NTG) on Intellectual Disabilities and Dementia Practices. We encourage you to visit the NTG website for more information on their activities and to become a member.

We have learned through interactions with families in the online support group that there are lots of questions, many uncertainties, multiple feelings of loss, limited resources in local communities, and great recognition that love is most important for all of us.

Please do circulate NTG Caregiver News (Volume 1 Issue 1) March 2017 among your colleagues and to any family caregiver groups with which you have contact.

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


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.

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
Telephone: +1 518 442-5347

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