Main conclusions agreed during the Summit on Intellectual Disability and Dementia

PRINCIPALES CONCLUSIONES ACORDADAS DURANTE LA CUMBRE SOBRE DISCAPACIDAD INTELECTUAL YDEMENCIA

ISSN: 0210-1696

DOI: http:/ /dx.doi.org/10.14201/scero2018492115122

Matthew P. JANICKI University of Illinois at Chicago, USA

Karen WATCHMAN University of Stirling, Scotland, UK

Juan FORTEA ORMAECHEA Centro Medico de Down de la Fundaci Catalana de Sindrome de Down (FCSD) y Servicio de Neurologia def Hospital de la Santa Creu i Sant Pau jfortea@santpau.cat

Y miembros de! International Summit on Intellectual Disability and Dementia

Supporting advanced dementia in people with Down syndrome and other intellectual disability: consensus statement of the International Summit on Intellectual Disability and Dementia

M. McCarron,1 P. McCallion,2 A. Coppus,3 J. Fortea,4 S. Stemp,5 M. Janicki6 & K. Watchman7

1School of Nursing and Midwifery Studies, Trinity College Dublin, Dublin, Ireland

2 College of Public Health, Temple University, Philadelphia, PA, USA

3 University Medical Center, Radboud Universiteit, Nijmegen, Gelderland, The Netherlands

4 Fundacio Catalana per a la Recerca i la Innovacio, Barcelona, Catalunya, Spain

5 Reena, Toronto, Canada

6 Department of Disability and Human Development, University of Illinois at Chicago, Chicago, IL, USA

7 Faculty of Health Sciences and Sport, Stirling, Scotland

Abstract Background The International Summit on Intellectual Disability and Dementia (Glasgow, Scotland; October 2016) noted that advanced dementia can be categorised as that stage of dementia progression characterised by significant losses in cognitive and physical function, including a high probability of further deterioration and leading to death. Method The question before the Summit was whether there were similarities and differences in expressions of advanced dementia between adults with intellectual disability (ID) and adults in the general population. Results The Summit noted challenges in the staging of advanced dementia in people with ID with the criteria in measures designed to stage dementia in the general population heavily weighted on notable impairment in activities of daily living. For many people with an ID, there is already dependence in these domains generally related to the individuals preexisting level of intellectual impairment, that is, totally unrelated to dementia. Hence, the Summit agreed that as was true in achieving diagnosis, it is also imperative in determining advanced dementia that change is measured from the person’s prior functioning in combination with clinical impressions of continuing and marked decline and of increasing co-morbidity, including particular attention to late-onset epilepsy in people with Down syndrome. It was further noted that quality care planning must recognise the greater likelihood of physical symptoms, co-morbidities, immobility and neuropathological deterioration. Conclusions The Summit recommended an investment in research to more clearly identify measures of person-specific additional decline for ascertaining advanced dementia, inform practice guidelines to aid clinicians and service providers and identify specific markers that signal such additional decline and progression into advanced dementia among people with various levels of pre-existing intellectual impairment

2017 National Research Summit on Dementia Care, Services and Supports for Persons with Dementia and their Caregivers: Final Report

The final report from the 2017 National Research Summit on Dementia Care, Services and Supports for Persons with Dementia and their Caregivers has been released.

Download Summit Final Recommendations 5-17-18 and the Summit Final Report 5-17-18. The RRTCDD and the National Task Group on Intellectual Disabilities and Dementia Practice developed one of the pre-summit reports and presented and participated in this meeting.

The goals of the Summit were to identify what we know and what we need to know in order to accelerate the development, evaluation, translation, implementation, and scaling up of comprehensive, effective, dementia care, services, and supports to improve quality of care, quality of life, and the lived experience of dementia for people with the condition and their caregivers. One of the main objectives in planning the summit was to involve a wide array of stakeholders to build understanding about the many different dementia-related issues and topics that interest and concern them. Five hundred people attended the summit in person, and another 1,000 watched the videocast. The Summit received almost 700 research recommendations from many sources, including summit speakers, stakeholder groups that met before the summit, individuals who attended pre-summit meetings, individuals who attended the summit, and others who submitted recommendations to the Summit public website. Following the summit, the research recommendations were distilled into 12 broad themes. The final report includes 58 research recommendations that address topics ranging from clinical care and support for family caregivers, to engagement of persons with dementia and caregivers in the research process, and approaches for disseminating effective programs and services so they are available for persons with dementia and their families in communities across the country.

Some funding for research to address summit recommendations has already been announced, in particular by the National Institute on Aging. NIA has also decided to add the National Research Summit on Care, Services and Supports for Persons with Dementia and their Caregivers to the regular 3-year rotation of the 2 other dementia-related national summits, the National Research Summits on Alzheimer’s Disease (NIA) and Alzheimer’s Disease Related Dementias (NINDS).

The following is the summit website, https://aspe.hhs.gov/national-research-summit-care-services-and-supports-persons-dementia-and-their-caregivers. The website includes all the power points, pre-summit and stakeholder group reports, recommendations from all sources, and a link to the videocasts for the two days of the summit.

National task group early detection screen for dementia

Esralew, L., Janicki, M.P.., & Keller, S M. (2017).  National task group early detection screen for dementia (NTG-EDSD) [Chapter 11].  In V.P. Prasher (Ed.), Neurological assessments of dementia in Down syndrome and intelectual disabilities (pp. 197-213, Appendix I).  Basel, Switzerland: Springer. DOI 10.1007/978-3-319-61720-6_11

The Intersection of Intellectual Disability and Dementia: Report of The International Summit on Intellectual Disability and Dementia

Karen Watchman, PhD and Matthew P Janicki, PhD (Members of the International Summit on Intellectual Disability and Dementia)

The Gerontologist, gnx160, https://doi.org/10.1093/geront/gnx160
Published:
02 November 2017

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: (a) 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), (b) 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 (c) advocacypublic impactfamily caregiver issues(nomenclature/terminology, inclusion of persons with ID in national plans, and family caregiver issues). Outcomes included recommendations incorporated into a 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.

2017 National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers

The National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers is two-day meeting of researchers, service providers, persons with dementia, family caregivers, and other stakeholder groups.

Source: 2017 National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers

Registration is open for the 2017 National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers.

Registration is free, but space is limited so please register as soon as possible if you want to attend in-person on the NIH campus. To register, click here. If you prefer to watch the videocast, please register and choose the “videocast” option. A link and additional details will be sent to you approximately one-week prior to the event.

The Summit is two-day meeting of researchers, service providers, persons with dementia, family caregivers, and other stakeholder groups. It will be held at the Natcher Building’s Ruth L. Kirschstein Auditorium of the National Institutes of Health in Bethesda, Maryland, on October 16 and 17, 2017, and it is free and open to the public.

The Summit is intended to identify what we know now and what we still need to learn in order to accelerate the development, evaluation, translation, implementation, and scaling up of comprehensive care, services, and supports for persons with dementia, families, and other caregivers.

We are very pleased to announce that Prof. Tamar Heller, the chair of the ad hoc working group on caregiving on dementia and intellectual disability (commissioned by the NTG) will be speaking at the Summit and conveying the recommendations made by the group on behalf of the NTG. The working group’s report will shortly be posted on the NTG website.

The Summit is focused on research that is needed to improve quality of person- and family-centered care and outcomes across care settings, including quality of life and the lived experience of persons with dementia and their caregivers. To view the draft agenda and list of speakers, click here.

If you are interested in attending, please register early and arrange for your lodging as soon as possible as this will be a very popular event. The location in Bethesda has limited hotel space near by, but the NIH campus is on the Metro’s Red Line (Medical Center station) — so access from anywhere in the metropolitan DC area is fairly easy.

If you do decide to attend, please let us know so we can keep in touch about any ancillary activities related to the NTG.

It will be held at the Natcher Building’s Ruth L. Kirschstein Auditorium of the National Institutes of Health in Bethesda, Maryland, on October 16 and 17, 2017, and it is free and open to the public. The Summit is intended to identify what we know now and what we still need to learn in order to accelerate the development, evaluation, translation, implementation, and scaling up of comprehensive care, services, and supports for persons with dementia, families, and other caregivers. The Summit is focused on research that is needed to improve quality of person- and family-centered care and outcomes across care settings, including quality of life and the lived experience of persons with dementia and their caregivers.Please note: If you cannot attend the Summit in-person, the event will be live-streamed. If you prefer to watch the videocast, please register and choose the “videocast” option. A link and additional details will be sent to you approximately one-week prior to the event.

 

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.

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.

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.