Family Support
Dear Families,
As the mother of three adult children with Down syndrome (two of whom have mild dementia), it is my honor to welcome you to The National Task Group on Intellectual Disabilities and Dementia Practices (NTG) Family Support website. As family caregivers, we are always looking for information, resources and support to enable us to be the best caregivers we can be. We recognize that many family members provide hands-on, day-to-day care, others provide financial or legal assistance, while others are involved from a distance, but still in important ways. And, the NTG recognizes the care given by Direct Support Professionals (DSPs) and strives to provide them with the information and support they need. No matter how you provide care, the work NTG does supports all caregivers, especially family caregivers.
The NTG is committed to providing the most current information and resources on disability and dementia topics and to offer support. As researchers and physicians learn more about treating dementia, we will bring that information to you along with information on topics that many families are searching for. I also invite you to join our new webinars and podcasts and our virtual family support group. The NTG’s Family Support’s email is familysupport@the-ntg.org should you ever have a question or concern. Remember, you are not alone on your caregiving journey even though some days you may feel that you are. The NTG is here for you.
Nancy Murray
Family Support Committee
(Ex Officio) Matthew P. Janicki, Ph.D.
University of Illinois Chicago
Co-President, National Task Group on Intellectual Disabilities and Dementia Practices
Past Member, Federal Advisory Council on Alzheimer's Research, Care, and Services
(Ex Officio) Seth M. Keller, MD, FAAN
Past President AADMD
Co-President NTG
Past Chair Adult IDD Section AAN
(Ex Officio) Kathryn G. Pears, MPPM
Chief Operating Officer
Chair: Nancy Murray MS
Advocacy Liaison, William Penn Human Services
Chair, The Provider Alliance Government Affairs Committee
Board Chair, Pennsylvania Assistive Technology Foundation
Colleen Hatcher
Chief of Staff
National Down Syndrome Society
Christina N. Marsack-Topolewski, Ph.D., LMSW
Associate Professor of School of Social Work, Eastern Michigan University
Michigan-Developmental Disabilities Institute (MI-DDI) Affiliated Research Associate
Mary Milnamow, MSS
PhD Candidate
HPPAE Coordinator
University at Buffalo School of Social Work
Rick Rader, MD, FAAIDD, FAADM, DHL
Director, Habilitation Center, Orange Grove Center
President, American Association on Health and Disability
Board, American Academy of Developmental Medicine and Dentistry
Board, Alliance for Disability in Health Care Education
Executive Committee, Friends of the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention
Medical Advisory Committee, Special Olympics International
Emeritus Advisor, Agency for Healthcare Research and Quality, US Dept of Health and Human Services
Editor-in-chief, HELEN, J of Human Exceptionality
Member, National Academy of Practice in Medicine
National Medical Advisor, National Alliance for Direct Support Professionals
Kathryn Service, RN, MS, FNP-BC, CDDN
Nurse Practitioner Consultant, Massachusetts Department of Developmental Services
Dementia Care Specialist Advanced Practice Provider
Board of Directors, National Task Group on Intellectual Disabilities & Dementia Practices (NTG), Secretary
Webinars and Recorded Events
Upcoming Events
Free Webinar - Registration Required
11/17/2025 7pm - 8pm ET via Zoom
Capturing Observations of Change Using the NTG's Early Detection Screen for Dementia (NTG-EDSD)
Discover how the NTG Early Detection Screen for Dementia (NTG-EDSD) can help you recognize early signs of dementia in adults with intellectual disabilities or Down Syndrome. View Flyer / Registration Link
Past Events
5/19/2025 Free Webinar
Families Linking to GUIDE to Receive Supports for Adults with Intellectual Disability and Dementia
Free Webinar for Family Caregivers on linking to GUIDE
GUIDE is a new program that can offer support to families caring for a Medicare/Medicaid beneficiary with an intellectual disability and dementia.
NTG 2024 Family Webinar Series #1
Process of Aging
Presenter: Mary Stephens, MD, MPH, FAAFP, FAADM
Early Screening for Cognitive Changes
Presenter: Michael May, Ed.D, BCBA, LPC, LBS, NADD-CC
Life Planning for Different Phases of the Life Journey
Presenter: Brittany Goodrich, B.S.
Behavioral Changes that Occur with Aging & Dementia
Presenter: Katie Frank, PhD, OTR/L
Family Panel - Sharing Personal Experiences
Presenters: Hut Beall, B.A., MLS
Sharon Trocki-Miller, M.Ed
Leone Murphy, A.P.N., B.C.
11/20/2024 Free Webinar
Cognitive Losses and Holiday Celebrations
Holiday and other celebrations, while often joyful and fun, can also be stressful and confusing for individuals with cognitive losses, family members, and care staff. We will look at factors that influence these situations, and focus on understanding strategies to improve the experience for all involved.
Family Support Groups
NTG's Online Family Support Group
1st Thursday Evening of Every Month
There are many families who are accompanying their loved one with Down syndrome or other Intellectual Disability on the Alzheimer's (Dementia) journey. It can feel like a lonely path, but it doesn't have to. Join other family caregivers in regularly scheduled online meetings to discuss your concerns, to share your fears, your joys, and to learn.
For more information about the online support group or how to join the monthly meetings please email Kathy Service at kathyservice@gmail.com or familysupportgroup@the-ntg.org.
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Down Syndrome and Alzheimer's/Down Syndrome Regression Support
Private Facebook Group
This is a support group for families of people who have a primary diagnosis of Down syndrome with an additional diagnosis of Alzheimer's or Down Syndrome Regression.
This group was created to provide a safe environment for families and those who care for, support and love people with Down syndrome who are experiencing a loss of skills, significant difficult behavior, or other health issues as a result of Alzheimer's or Down Syndrome Regression.
To be considered for membership in this group, anyone requesting membership must thoroughly answer the three questions listed. The administrators of the group reserve the right to decline membership to anyone who has not answered the questions with enough information to ensure the group is a good fit.
Click here to join the Facebook group (not affiliated with The NTG).
New Jersey Down Syndrome and Alzheimer's Family Support Group
Online Support Group
We meet the last Tuesday of every month at 3pm on Zoom. We hear from experts who share helpful information, and provide a place for caregivers to ask questions, express concerns and share experiences on their Down Syndrome, aging and dementia journey.
Contacts:
Leone Murphy, APN leonemur2@yahoo.com
Jane Boyle janemboyle@aol.com
Zoom INFO: https://us02web.zoom.us/j/81271421820
Meeting ID: 812 7142 1820
One tap mobile:
+3017158592, 812771421820#
Dial by your location
+1 646 558 8656
In The News
10/30/2025 - National Alliance for Caregiving
New Resource: State Data Profiles
The National Alliance for Caregiving and AARP have released a new, state-level joint analysis of the Caregiving in the US 2025 report. The new resource includes state profiles that examine family caregiving data, including demographics, challenges, and available supports. The organizations have also released a summary report highlighting key insights and emerging trends that reveal how geography shapes the family caregiving experience across different states. View state profiles and read the summary report in the article link below.
8/12/2025 - UC Irvine News
Women with Down syndrome may develop Alzheimer's disease more rapidly than men
UC Irvine study finds sex differences may impact treatment approaches.
6/21/2025 - ScienceDaily
Iron overload: The hidden culprit behind early Alzheimer’s in Down syndrome
New USC research indicates how iron-related oxidative damage and cell death may hasten the development of Alzheimer's disease in people with Down syndrome.
Resources on Dementia and Alzheimer's Disease
Family-friendly Guides and Materials
Screening & Assessment Resources
NTG-EDSD
The NTG developed the NTG-Early Detection Screen for Dementia (NTG-EDSD), available worldwide, which was designed in response to requests by families, caregivers, and agencies for a tool useful to record observations of changes in function. It can be used by anyone, family, or others. The NTG-EDSD does not diagnose dementia but is helpful to collecting information for those pertinent discussions with a physician and for person-centered dementia care planning by families and other care providers.
A highly informative article in Exceptional Parent, by Dr. Craig Escudé titled, 'Dementia and Intellectual Disabilities', offers an inside view of how family members can use the NTG-EDSD. He notes that "Dementia can be a pretty scary thing for anyone. For people with disabilities, changes or a decline in cognitive functioning can be quite challenging to recognize, specially in people who do not use words to communicate." To read his informative explanation on using the NTG-EDSD, click here.
For more information on our webnsite, go to our NTG-EDSD page.
DSMIG-USA Initiates ECHO Program for Practitioners Aiding Families
Many families who don’t have access to a Down Syndrome clinic reach out to members of the Down Syndrome Medical Interest Group-USA (DSMIG) seeking expert health care for their loved one with Down syndrome. Often they find that their health providers do not have knowledge of the specific health care needs of individuals with Down syndrome. In response to that need, DSMIG-USA has developing a variety of means to share information and to support providers in caring for children and adults with Down syndrome, one is an internet ECHO series. This series permits the ready exchange of information as well as a discussion among experts and participants.
DSMIG has opened its ECHO series to clinicians who have people with Down syndrome as primary care patients in April 2023. The series is designed to help families draw their primary care practitioner (PCP) onto the ECHO so that he/she will become familiar with the health issues of people with Down syndrome. The goal is to use the 'all teach, all learn' ECHO model to increase knowledge of the health and medical care of people with Down syndrome, and to participate in a virtual knowledge-sharing community. DSMIG is asking families to let their PCP know of the ECHO series and ask them to participate.
For more information and registration: https://www.dsmig-usa.org/project-echo
For questions please contact Emilie Perkins EPerkins@raybourn.com .
6 Pillars of Brain Health
NIA Issues Infographic on Types of Dementia
The National Institute on Aging has produced an excellent infographic to help spread the word about the different types of dementia.
Here is a link to the infographic from the NIA and further explanatory information.
Talking About Dementia
What is Dementia?
Things to Know About Health and Adults with Dementia
The NTG FAQ
Some Basic Questions about Adults with Intellectual/Developmental Disabilities Affected by Alzheimer's Disease or other Dementias
Guidelines for Structuring Community Care and Supports for People with Intellectual Disabilities Affected by Dementia
Additional Resources
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Full Library of Publications
The NTG has compiled a full library of publications concerning Alzheimer's or other dementias as they relate to adults with intellectual disabilities.
To browse through our library, go to our Publications page.
The Helen Journal
Magazine for Human Services and People Issues
Helen: The Journal of Human Exceptionality is a magazine published as a resource for parents and clinicians regarding people with disabilities for inclusive health. It includes helpful articles, advice, and tools to advocate for your loved one. Articles range on a variety of topics, including aging. Go to the Helen site to read or download an issue.
Organizations Families May Find of Interest
The Arc of the United States (thearc.org)
The Arc of the United States is the nation’s leading nonprofit organization advocating for and supporting people with intellectual and developmental disabilities (IDD) and their families. Since 1950, the organization has worked to promote and protect the human rights of people with disabilities and ensure their full inclusion and participation in every part of community life.
The National Down Syndrome Society (NDSS) (ndss.org)
Founded in 1979, the National Down Syndrome Society (NDSS) empowers individuals with Down syndrome and their families by driving policy change, providing resources, engaging with local communities, and shifting public perceptions. The organization’s work is achieved through four key pillars: Resources & Support, Research, Advocacy & Policy, and Community Engagement. In October, 2025, NDSS joined forces with LuMind to advance the rights, health, and well-being of individuals with Down syndrome. By uniting the deep advocacy roots, community leadership, resources, and policy influence of NDSS with LuMind IDSC’s expertise in research and health equity, this combined organization will harness complementary strengths to create even greater impact.
The National Down Syndrome Congress (NDSC) (ndsccenter.org)
The National Down Syndrome Congress (NDSC) is a not-for-profit organization dedicated to an improved world for individuals with Down syndrome. Founded in 1973, the organization is the leading national resource of support and information for anyone touched by or seeking to learn about Down syndrome, from the moment of diagnosis, whether prenatal or at birth, through adulthood. The mission of the National Down Syndrome Congress is to provide information, advocacy, and support concerning all aspects of life for individuals with Down syndrome. NDSC exists with the purpose to promote the interests of people with Down syndrome, to educate through awareness, to advocate and ensure their rights are recognized and protected, to empower, and to inspire and reshape the way people understand and experience Down syndrome.
American Association on Health and Disability (aahd.us)
The American Association on Health and Disability is dedicated to ensuring health equity and inclusion for persons with disabilities through policy, research, and dissemination. The organization provides opportunities to collaborate in producing actionable disability research and communications for better health, initiatives that focus on health promotion and wellness, reducing health disparities, community inclusion, and advocacy, and provides valuable information about multiple aspects of disability and public health for children and adults with disabilities.
AADMD American Association on Developmental Medicine and Dentistry (aadmd.org)
The AADMD American Association on Developmental Medicine and Dentistry is dedicated to improving the quality of heathcare for individuals with intellectual and developmental disabilities (IDD) by providing a forum for healthcare professionals to improve the quality of care for people with IDD. The organization focuses on education, advocacy and membership to enhance the healthcare experience for individuals with IDD and aims to reform the healthcare system to ensure parity of access and quality for all Americans with IDD.
Caregiver Action Network (CAN) (caregiveraction.org)
Caregiver Action Network (CAN) is the nation’s leading family caregiver organization. It works to improve the quality of life for tens of millions of family caregivers. These Americans care for loved ones with chronic conditions, disabilities, or diseases. CAN also supports those meeting the living needs of older adults. The organization's goals are to:
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Serve an increasing number of family caregivers with practical help, support and information.
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Advance the case for family caregiver recognition and support.
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Improve the quality of life for family caregivers by reducing their day-to-day stress and financial distress.
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Build family caregiver confidence and capability through the dissemination of educational programs that demonstrate a positive impact on the lives of family caregivers.
National Alliance for Caregiving (caregiving.org)
The National Alliance for Caregiving is dedicated to improving quality of life for friend and family caregivers and those in their care. The National Alliance for Caregiving focuses on research, policy analysis, programs, technical assistance, and advocacy for caregiver families.