NATIONAL TASK GROUP ON INTELLECTUAL DISABILITIES AND DEMENTIA PRACTICES
Volume 2 Issue 3 NTG Caregiver News
NATIONAL TASK GROUP ON INTELLECTUAL DISABILITIES AND DEMENTIA PRACTICES
Volume 2 Issue 3 NTG Caregiver News
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.
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.
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.
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.
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.
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.
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
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)