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
Kathy Service (Facilitator of NTG Family Support Group)
RN, M.S., FNP-BC, CDDN
Retired from the Massachusetts Department of Developmental Services
Webinars and Recorded Events
Upcoming Events
Stay tuned for upcoming events for families!
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
Online Family Support Group
1st Thursday 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 familysupportgroup@the-ntg.org.
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).
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Family Support Resources
What is Alzheimer's disease?
Some quick reads...
Simply put, Alzheimer’s disease is a progressive, irreversible brain disorder that affects memory, thinking, and language skills. Over time, people living with Alzheimer’s disease may become unable to carry out daily activities. Many adults with Down syndrome are at particular risk for this brain disease.
Some useful resources that are available from the federal government...
US Food & Drug Administration's 'Alzheimer's Disease'
National Institute on Aging's 'Alzheimer's Disease & Related Dementias'
Centers for Disease Control and Prevention's 'Alzheimer’s Disease and Related Dementias'
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
To see schedule
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 .
Family Caregiver Resources
Family Caregiver Publications and News
The NTG has compiled a list of publications and news articles that are helpful to family caregivers.
To browse through this list, go to our Family Caregiver Resources page.
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Additional Resources
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.
Health Advocacy Resources
NTG Materials Enabling Families Speaking with Practitioners
The NTG offers a number of guides and other helpful aids for those times when you need to have a thoughtful conversation with your family physician or specialist about your son, daughter, other kin with an intellectual disability.
Click here for access to some of these resources.
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.