Consensus statement of the international summit on intellectual disability and Dementia related to post-diagnostic support

Karen Dodd-a, Karen Watchman-b, Matthew P. Janicki-c, Antonia Coppus-d,e, Claudia Gaertner-f, Juan Forteag-h, Flavia H. Santos-i,j, Seth M. Keller-k and Andre Strydom-l

a-Department of Psychology, Surrey and Borders Partnership NHS Foundation Trust, Leatherhead, UK;
b-University of Stirling, Scotland;
c-University of Illinois at Chicago, USA;
d Radboudumc, Nijmegen, The Netherlands;
e Dichterbij Centre of the Intellectual Disabled, Gennep, The Netherlands;
f Theodor Fliedner Foundation, Muelheim an Der Ruhr, Germany;
g Hospital De La Santa Creu i Sant Pau–Biomedical Research Institute Sant Pau, Barcelona, Spain;
h Down Medical Center, Fundaci_o Catalana S_ındrome de Down, Barcelona, Spain; iUniversity of Minho, Braga, Portugal;
j UNESP – S~ao Paulo State University, Bauru, Brazil;
k Advocare Neurology South Jersey, Lumberton, NJ USA;
l University College London, UK

Objectives: Post diagnostic support (PDS) has varied definitions within mainstream dementia services and different health and social care organizations, encompassing a range of supports that are offered to adults once diagnosed with dementia until death.
Method: An international summit on intellectual disability and dementia held in Glasgow, Scotland in 2016 identified how PDS applies to adults with an intellectual disability and dementia. The Summit proposed a model that encompassed seven focal areas: post-diagnostic counseling; psychological and medical surveillance; periodic reviews and adjustments to the dementia care plan; early identification of behaviour and psychological symptoms; reviews of care practices and supports for advanced dementia and end of life; supports to carers/ support staff; and evaluation of quality of life. It also explored current practices in providing PDS in intellectual disability services.
Results: The Summit concluded that although there is limited research evidence for pharmacological or non-pharmacological interventions for people with intellectual disability and dementia, viable resources and guidelines describe practical approaches drawn from clinical practice. Post diagnostic support is essential, and the model components in place for the general population, and proposed here for use within the intellectual disability field, need to be individualized and adapted to the person’s needs as dementia progresses.
Conclusions: Recommendations for future research include examining the prevalence and nature of behavioral and psychological symptoms (BPSD) in adults with an intellectual disability who develop dementia, the effectiveness of different non-pharmacological interventions, the interaction between pharmacological and non-pharmacological interventions, and the utility of different models of support.

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Intellectual Disability and Dementia: A Caregiver’s Resource Guide for Rhode Islanders

Source: The National Task Group on Intellectual Disabilities and Dementia Practices

Citation: Seven Hills Rhode Island. (2017). Intellectual Disability and Dementia: A Caregiver’s Resource Guide for Rhode Islanders. Woonsocket, Rhode Island: Seven Hills Rhode Island and the National Task Group on Intellectual Disabilities and Dementia Practices. For print copies contact: Seven Hills Rhode Island, 30 Cumberland Street, Woonsocket, RI 02895.

Download Intellectual Disabilities and Dementia A Caregivers Resource Guide for Rhode Islanders

Intellectual Disability and Dementia: A Caregiver’s Resource Guide for Rhode Islanders

This guide, while written for families of adults with intellectual disability, is a useful tool for anyone who provides care. Caregivers play an important role in the overall wellness of individuals they support. Our goal is to provide information that will be helpful to anyone who cares for adults with intellectual disability.

As individuals with an intellectual or other developmental disability age, you may see changes that are confusing and upsetting. It can be frightening not knowing what is happening to them or how to best support him or her.

This guide was designed to provide caregivers of individuals with an intellectual disability an overview of dementia, as well as provide information about caregiving and support options available in Rhode Island.

A note about Alzheimer’s disease and dementia. Alzheimer’s is a disease of the brain which causes a person to lose his or her memory and ability to function. Those losses are termed dementia. Alzheimer’s is not the only cause of dementia – see the glossary at the end for the different causes.

We hope that you will find this guide to be a foundation for your knowledge as we have included some commonly used words and phrases, a basic overview of the disease process, some tips for caregiving, as well as local Rhode Island and national organizations that offer training and services. In no way should this guide take the place of consulting with your loved one’s healthcare provider.

The guide is divided into sections, each with a different focus to aid you on your caregiving journey. You do not need to read this guide from cover to cover, rather it has been written so that you can find information you need related to the questions or concerns you may have at any time during an individual’s journey through dementia.

Perspectives about support challenges facing health workers assisting older adults with and without intellectual disability in rural versus urban settings in Australia

Rafat Hussain , Matthew P. Janicki , Marie Knox, Stuart Wark & Trevor Parmenter (2017): Perspectives about support challenges facing health workers assisting older adults with and without intellectual disability in rural versus urban settings in Australia, Journal of Intellectual & Developmental Disability, DOI: 10.3109/13668250.2017.1326589

Source: Journal of Intellectual & Developmental Disability


Aims: Life expectancy for both sexes in Australia exceeds 80 years, with individuals with intellectual disability also increasingly living into older age. This research aimed to comparatively examine perceptions of staff supporting either older adults or age peers with lifelong intellectual disability.

Methods: This project asked 420 medical, health, and support workers about training adequacy, health services access, and trigger points for premature institutionalisation. This paper is based on a subsample of 196 respondents who provided quantitative and qualitative responses.

Results: There was considerable variation in confidence in supporting ageing individuals, while only 23.7% of doctors reported their training was adequate to support adults ageing with intellectual disability. A lack of services and poor carer health were identified as triggers for premature institutionalisation.

Conclusions: The study revealed key differences in staff perceptions of support provision and training adequacy when comparing ageing individuals with intellectual disability to the general ageing population.

Download Perspectives about support challenges-JIDD

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.


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:

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.

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

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.

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