The Intersection of Intellectual Disability and Dementia: Report of The International Summit on Intellectual Disability and Dementia
Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to Nomenclature
Article Citation: Matthew P. Janicki, Philip McCallion, Michael Splaine, Flavvia H. Santos, Seth M. Keller, and Karen Watchman (2017) Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to Nomenclature. Intellectual and Developmental Disabilities: October 2017, Vol. 55, No. 5, pp. 338-346. https://doi.org/10.1352/1934-9556-55.5.338
William H. Neumeier1, Christine Grosso2, James H. Rimmer1
1 University of Alabama at Birmingham and Lakeshore Foundation Research Collaborative
Obesity is an increasingly common condition that is characterized by an increase in the number and size of fat cells in the body. Obesity is most commonly measured by Body Mass Index (BMI), with a BMI ranging from 25-29.9 kilograms per meter squared (kg/m2) indicating an individual is overweight, and a rate greater than 30 kg/m2 indicating a state of obesity. Rates of overweight and obesity among child and adult populations are an increasing healthcare concern. The number of individuals who are overweight or obese has increased over the past 40 years . This has resulted in an increased focus, understanding, and action for obesity treatment.
Obesity rates are a concern for the general population, but research findings consistently report even higher rates of obesity among individuals with intellectual and developmental disabilities (IDD). The Centers for Disease Control and Prevention report approximately 35% of the general population is obese, while the rate of obesity among adults with IDD is as high as 58.5% in the United States [2-5]. The consequences of obesity predispose adults with IDD to a greater risk of secondary health conditions that can impair their health status and quality of life. In addition, individuals with IDD may possess non-modifiable risk factors for obesity, such as mobility limitations or factors related to the individual’s diagnosis. Secondary risk factors, such as barriers to physical activity, lack of social support, higher levels of food insecurity, limited access to proper nutrition, medications that may influence weight, and transportation, may also increase susceptibility to obesity for a child or adult with IDD [2, 6]. In total, obesity is a complex, multi-faceted condition that needs greater attention in the IDD population. The 2005 Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities emphasizes equal opportunities for healthy living for individuals with disabilities. This policy brief will highlight known issues related to obesity in general, issues uniquely related to obesity for individuals with IDD, and provide recommendations and resources for addressing these issues.
(Glasgow, Scotland – October 13-14, 2016)
International Summit Consensus Statement: Intellectual Disability Inclusion in National Dementia Plan
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 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. The International Summit on Intellectual Disability and Dementia reviewed the inclusion of ID in national plans recommending that inclusion goes beyond just description and relevance of ID. Persons with ID 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 in older life.
American Journal of Alzheimer’s Disease & Other Dementias, 2017 June, Vol 32, No 4, pp. 230-237.
Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to Nomenclature
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. Like general applications, language related to dementia in ID field often lacked precision and could lead to a misunderstanding of the condition(s) under discussion. Most articles related to ID and dementia reporting clinical or medical research generally provided a definition of dementia or related terms; social care articles tended toward term use without definition. Toward terminology standardization within studies/reports on dementia and ID, the Summit recommended (a) gaining 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.
Intellectual and Developmental Disabilities, in press.
Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to End-of-life Care in Advanced 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.
Journal of Applied Research in Intellectual Disability, 2017, DOI: 10.1111/jar.12349
Dying Well with an Intellectual Disability and Dementia
Abstract: As more people with intellectual disabilities live into old age, the prevalence of dementia in this group is increasing. The authors examine the challenges to dementia practice presented by intellectual disability. Expertise in the field of intellectual disability and advanced dementia is rare and our summit offered a series of recommendations including ongoing exchange of experiences and skills across professions, development of tools and scales that facilitate understanding of the progression of dementia, and more equitable access to palliative care and hospice services with increased and timely referral. We also recommended that intellectual disability services increased understanding of the fundamental dementia related needs which complicate end-of-life care.
The Journal of Dementia Care, July/August 2017, Vol 25, No 4, pp 28-31.
Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to Post-Diagnostic Support (Aging & Mental Health)
Abstract: Post diagnostic support (PDS) has varied definitions within mainstream dementia services and by among different health and social care oriented organizations, but generally it is recognized that it encompasses a range of supports that are offered to adults once diagnosed with dementia and extending of the condition, until death. An international summit on intellectual disability and dementia held in Glasgow, Scotland in 2016 identified how PDS applies to adults with who have an intellectual disability with dementia. The Summit proposed a model that encompassed eleven focal areas: post-diagnostic counseling; understanding the needs related to the intellectual disability; specific interventions and treatments; psychological and medical surveillance; early identification of behavior and psychological symptoms; periodic reviews of the dementia care plan; care during advanced dementia; care at end of life; supports for carers and regular evaluation of quality of life linked with reviews of the person’s dementia care plan. It also explored current practices in providing PDS in intellectual disability services. The Summit concluded that although there is limited research evidence for interventions (whether pharmacological or non-pharmacological) for people with intellectual disability and dementia, there are viable resources and guidelines that 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. 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 and the interaction between pharmacological and non-pharmacological interventions, and the utility of different models of support.
Aging & Mental Health, in press
Summative Report of the International Summit on Intellectual Disability and Dementia (The Gerontologist)
Abstract: An International Summit on Intellectual Disability and Dementia, held in Glasgow, Scotland (October 13-14, 2016) drew individuals and representatives of numerous international and national organizations and universities with a stake in issues affecting adults with intellectual disability (ID) affected by dementia. A discussion-based consensus process was used to examine and produce a series of topical reports examining three main conceptual areas: (1) human rights and personal resources (applications of the Convention for Rights of People with Disabilities and human rights to societal inclusion, and perspectives of persons with ID), (2) individualized services and clinical supports (advancing and advanced dementia, post-diagnostic supports, community supports and services, dementia-capable care practice, and end-of-life care practices), and (3) advocacy, public impact, family caregiver issues (nomenclature/ terminology, inclusion of persons with ID in national plans, and family caregiver issues). Outcomes included recommendations incorporated into series of publications and topical summary bulletins designed to be international resources, practice guidelines, and the impetus for planning and advocacy with, and on behalf of, people with ID affected by dementia, as well as their families. The general themes of the conceptual areas are discussed and the main recommendations are associated with three primary concerns.
The Gerontologist, in press
Several other papers are under consideration by various journals.
Consensus Statement of the International Summit on Intellectual Disability and Dementia on Valuing the Perspectives of Persons with Intellectual Disability
Abstract: The International Summit on Intellectual Disability and Dementia held in Scotland in 2016 covered a range of issues related to dementia and intellectual disability, including the dearth of personal reflections of persons with intellectual disability affected by dementia. This paper reflects on this deficiency and explores some of the personal perspectives gleaned from the literature, from Summit attendees, and from the experiences of persons with intellectual disability recorded or scribed in advance of the two-day Summit meeting. Omission of the perspectives of persons with intellectual disability in both policy and practice limits understanding of the experience of dementia. It leads to an overreliance on proxy reporting; something considered by the Summit to be a backwards step in person-centered work. The Summit recognized that the perspectives of persons with intellectual disability must be considered whenever interventions and supports are discussed with planning required at an earlier stage for advance directives that guide medical treatment, and for advice or counselling around relationships, the continuity of social networks, and when securing dementia-friendly housing. Systemic recommendations included reinforcing the value of the involvement of persons with intellectual disability in (a) research alongside removing barriers to inclusion posed by institutional/ethics review boards, (b) planning groups that establish services and supports for dementia, and (c) peer support efforts that help adults with intellectual disability who are affected by dementia (either directly or indirectly). Practice recommendations included (a) valuing personal perspectives in decision-making, (b) enabling peer-to-peer support models, (c) supporting choice in community dwelling arrangements, and (d) wider availability of materials for persons with intellectual disability that would promote understanding of dementia.
Journal of Intellectual Disabilities, in submission
Perspectives on Family Caregiving of Ageing People with Intellectual Disability Affected by Dementia: Commentary from the International Summit on Intellectual Disability and Dementia
Abstract: This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for caregiving among adults with intellectual disability (ID) affected by dementia. Seven opportunistic narratives offer context for relating a support-staging model to interpretations of various situations in which caregivers find themselves. The multi-dimensional model has two fundamental aspects: (1) identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and (2) defining how caregiving is influenced by the stage of dementia. We propose that staging can affect caregiving via different expressions: (1) the ‘diagnostic phase’, (2) the ‘explorative phase’, (3) the ‘adaptive phase’, and (4) the ‘closure phase’. The narratives illustrate both direct and indirect caregiving with a commonality the involvement of the caregivers and their attention to the care needs of an adult with ID. We conclude that the model has utility and shows the variability of caregiving, and that caregivers have various needs and tend to use whatever works and look to outside help only when they need it. Furthermore, a support-staging model can be useful in constructing research, defining family based support services, and setting public policy.
Journal of Gerontological Social Work, in submission
Quality Care for People with Intellectual Disability and Advanced Dementia: Guidance on Service Provision
Abstract: An International Summit on Intellectual Disability and Dementia held in Glasgow, Scotland, 13-14 October 2016considered both the poor understanding of, and inadequate preparation to address the clinical complications inherent in end stage advanced dementia among people with an intellectual disability. A statement was produced offering guidance on clinical practices to support care optimal care for people with intellectual disability and advanced dementia. The Summit agreed that quality care requires (a) responding to the person’s communication style and needs;(b) alerting carers to signs and symptoms that signal transition into the terminal phase of dementia including the dying phase; (c) offering supportive care focused on comfort, pain and symptom management, the alleviation of emotional distress, with a focus on both quality of life and of dying; (d) genuine inclusion of those who matter to the person (e) care for carers including families, staff and peers; and (f) greater collaboration between intellectual disability services, hospitals, primary care and palliative and hospice care. The Summit agreed that consistent with the ‘Edinburgh Principles’(Wilkinson & Janicki, 2002), advanced dementia care for people with an intellectual disability is best delivered with attention to person-centeredness, relationship-based care and palliative principles.
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.
Download Post-Summit Consensus Statement
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.
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
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.
Source: The Journal of Dementia Care July/August 2017 Vol 25 No 4
As more people with intellectual disabilities live into old age, the prevalence of dementia in this group is increasing. Kathryn Service and colleagues examine the challenges to dementia practice presented by intellectual disability.
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.
- University at Albany, Albany, NY, USA
- National Task Group on Intellectual Disabilities and Dememtia Practices, Eliot, ME, USA
- University of Minho, Braga, Portugal
- Trinity College Dublin, Dublin, Ireland
- Nurse Practitioner Consultant, Northampton, MA, USA
- Reena Foundation, Toronto, ON, Canada
- American Academy of Developmental Medicine and Dentistry, Lumberton, NJ, USA
- Catalan Foundation for Down Syndrome, Barcelona, Spain
- Geriatrics Consultant, Lee Center, NY, USA
- University of Stirling, Stirling, Scotland
- University of Illinois at Chicago, Chicago, IL, USA
Correspondence Philip McCallion, Center for Excellence in Aging Services, University at Albany, Albany, NY, USA. Email: firstname.lastname@example.org