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

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

Abstract

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.

Success for Students and Nurses with Disabilities: A Call to Action for Nurse Educators

Marks, B. & McCulloh, K. (2016). Success for Students and Nurses with Disabilities: A Call to Action for Nurse Educators, Nurse Educator, 41(1), 9-12. doi: 10.1097/NNE.0000000000000212.

This article presents a ‘‘call to action’’ for nurse educators to identify and implement best practices supporting the success of students with disabilities given recent federal legislative changes. Best practices for educating students with disabilities in nursing education are discussed. Increasing our understanding of disability from a variety of models—not just the medical model—will promote greater diversity and inclusivity within the nursing profession, which will enhance patient care.

Success for Students and Nurses with Disabilities: A Call to Action for Nurse Educators

HealthMatters Alert Newsletter Volume 2, Issue 1 (January/February 2017)

Project SEARCH at Cincinnati Children’s Awarded Grant from Ohio DD Council to Incorporate Health Matters Curriculum

Cincinnati, OH – Cincinnati Children’s has been awarded a $100,000 grant from the Ohio Developmental Disabilities Council to study Healthy Lifestyles for People with Disabilities. The goal of the project is to incorporate Health Matters Curriculum, a health education curriculum specifically designed for people with developmental disabilities, into Project SEARCH and create and test a clear set of guidelines for integration. The aim is to provide a general model for introducing health and fitness education into high school transition, a critical life stage for establishing patterns and habits for healthy and successful adult life.The proposed project leverages a partnership between Project SEARCH and UnitedHealthcare Community & State(UHC). Through this partnership, UHC purchased Health Matters Curriculum for distribution to all 430 Project SEARCH program sites.

Project SEARCH at Cincinnati Children’s Hospital Medical Center will be the lead organization, and will partner with the following organizations to carry out this project:

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Promoting sexuality across the life span for individuals with IDD

Ailey, SA, Marks, B, Crisp, C, Hahn, JE. (2003). Promoting sexuality across the life span for individuals with intellectual and developmental disabilities, Nurs Clin N Am 38, 229–252.

“No group in this country faces the sort of sexual and reproductive restrictions disabled people do: we are frequently prevented from marrying, bearing and/or rearing children, learning about sexuality, having sexual relationships and having access to sexual literature . . . [sexual] confusion arises as a consequence of society forcing us to internalize the notion that we are sexually inferior. This conspiracy, which society manufactures by way of discriminatory social policies which lead to our sexual subjugation, is keeping us in a state of sexual self-hate. I believe that this is done tacitly to keep us from doing the thing that poses an overwhelming threat to our disability-phobic society: taking their sons and daughters as sexual and life partners, bearing their grandchildren. If I sound full of rage to you, you’re reading me correctly, I am outraged.” —Barbara Faye Waxman, 1991, p. 85–6 [1]

Promoting sexuality across the life span for individuals with IDD – 2003

http://www.nursing.theclinics.com/article/S0029-6465(02)00072-5/abstract

Flourishing From the Start: What Is It and How Can It Be Measured?

Many practical challenges remain in specifying such measures, and in gaining widespread agreement on their use. Nevertheless, culturally responsive, brief, clear, and reliable measures that could replace those that traditionally have required lengthy surveys, observational assessments, and specialized training would be welcome. Even so, nearly all constructs require that data be collected directly from children and families, rather than from administrative data systems, since these typically document only basic demographic and service use information. Moreover, the information in such systems generally focuses on problems, e.g., poverty, food insecurity, maltreatment, and developmental delays/disabilities. Accordingly, other approaches are needed to collect data on flourishing.

http://bit.ly/2ng2rCT

Findings from the research indicate that early investments can support positive child development and result in long-lasting benefits. However, in order to successfully implement policies and programs that help children flourish, there needs to be a way to define, measure, and monitor what is meant by “flourishing.” A new research brief from Child Trends, Flourishing From the Start: What Is It and How Can It Be Measured? (March 2017), discusses the importance of establishing a conceptual model for defining and achieving flourishing as well as feasible measurement methods for assessing flourishing in a variety of settings and for different purposes. The authors recommend a set of critical constructs that, if measured, would provide a more balanced view of children that highlights child well-being or flourishing as well as promotive and protective factors.

Flourishing From The Start

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.

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

Karen Watchman, PhD1, Matthew P. Janicki, PhD2, Michael Splaine, MA3, Frode K. Larsen4, Tiziano Gomiero, PhD5 and Ronald Lucchino, PhD6

1 University of Stirling, Scotland, UK
2 University of Illinois at Chicago, USA
3 Splaine Consulting, Columbia, Maryland USA
4 Norwegian National Advisory Unit on Ageing and Health, Oslo, Norway
5 ANFFAS Trentino Onlus, Trento, Italy
6 Utica College, Sarasota, Florida USA

 

Abstract

The 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 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 in Scotland reviewed the inclusion of ID in national plans recommending 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 their 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 organisations on behalf of families, with need for an infrastructure in health and social care that supports quality care for dementia.

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)

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