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Soutien familial

Prendre soin d'un être cher atteint du syndrome de Down et de la maladie d'Alzheimer ou d'une autre démence peut être l'un des plus grands défis auxquels nous sommes confrontés. 

Nous n'avons pas à le faire seuls ! 

Webinars were offered at no cost, but registration was required
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NTG Has Concluded the NTG 2024 Family Webinar Series #1

NTG's NEW family webinar series on key issues related to aging/dementia and intellectual disability ran February-April 2024

1  February 27th - 1pm - 2pm ET  (US)
Process of Aging
Mary Stephens, M

2  March 12th - 1pm - 2pm ET  (US)

Early Screening for Cognitive Changes

Michael May, Ed.D.

3  March 26th - 1pm - 2pm ET  (US)

Life Planning for Different Phases of the Life Journey

Brittany Goodrich, B.S.

4  April 9th - 1pm - 2pm ET  (US)

Behavioral Changes that Occur with Aging and Dementia

Katie Frank, Ph.D.

5  April 23rd - 1pm - 2pm ET  (US)

Family Panel - Sharing Experiences

Hut Beall, BA; Sharon Trocki-Miller, M.Ed.; Leone Murphy, A.P.N.

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Click on image above to download webinar flyer.  Please feel free to share the flyer with your friends and collagues.

Our Speakers...
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Dr. Mary Stephens is an Associate Professor in Family and Community Medicine at Thomas Jefferson University, in Philadelphia, Pennsylvania, and a family physician with 25+ years of experience in patient care and co-founded the Adult Down syndrome program at Christiana Care in Wilmington, Delaware.

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Dr. Michael B. May is the Clinical Director for the Merakey East ICF Program in Philadelphia, Pennsylvania, where he supports individuals with a dual diagnosis of mental health disorders and intellectual disability and oversees administration of the NTG-EDSD.

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Brittany Goodrich, B.S. Director of the Kennedy Willis Center on Down Syndrome, Edmeston, New York, and is responsible for the ongoing education, training, and life planning services for individuals, families, and greater community of individuals with intellectual and/or developmental disabilities.

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Katie Frank, PhD, OTR/L is an occupational therapist at the Adult Down Syndrome Center at Advocate Health Care in Chicago, Illinois, and provides treatment and evaluation as well as facilitating groups for people with Down syndrome, and conducting trainings for staff, families, and caregivers.

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Hut Beall, B.A., MLS resides in Amherst, Massachusetts, with her husband and 24-year-old son. She had two siblings with Down syndrome, an older brother, James, and a younger sister, Anne, and an uncle with Down syndrome.

Sharon Trocki-Miller, M.Ed. is a family advocate and caregiver experienced in the needs of people with developmental disabilities and Alzheimer’s, and currently runs a support group through the Alzheimer’s Association Los Angeles, for caregivers caring for someone with a developmental disability and dementia

Leone Murphy, APN-C is mother of a 50-year-old daughter who has Down Syndrome, and the the founder and co-chair of the New Jersey Family Support Group for persons with dementia and intellectual disability; she also serves as the Administrator for the Statewide Clinical Outreach Program for the Elderly (S-COPE) for the R.W.J.B.H. Health Care System in New Jersey.

NTG défend les besoins des familles

Jadene Ransdell Provides Public Comment at NAPA Federal Council Meeting

Jadene Ransdell, former NTG Board member and parent advocate with the NDSS, spoke at the quarterly meeting of the federal Advisory Council on Alzheimer's Research, Care, and Services (the "NAPA Council") on January 31, 2023.  During the Public Comment period she gave an eloquent plea for more attention on supporting caregivers and establishing sound diagnostic resources to ascertain the presence of dementia in adults with Down syndrome and other intellectual disabilities. Ms. Ransdell noted that "correctly diagnosing Alzheimer’s disease in an individual with Down syndrome requires a specialized knowledge of this population, and there is a shortage of clinicians who have the requisite skills, knowledge, and experience.... Therefore, I encourage you to work with Down syndrome organizations ... to support the creation of diagnostic tools that could provide an accurate assessment and evaluation of individuals with Down syndrome who are showing signs of cognitive decline, and provide adults with Down syndrome access to adequate clinical care to ensure an accurate diagnosis of Alzheimer’s disease."

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Click on image to read full text

NTG défend les besoins des familles

Groupe de travail sur le soutien familial

Le NTG s'engage auprès des aidants familiaux, ainsi que des professionnels des services directs, qui soutiennent les personnes atteintes de déficience intellectuelle et de démence. Nous reconnaissons que de nombreux membres de la famille prodiguent des soins quotidiens directs à leur proche, tandis que d'autres y participent indirectement. Peu importe la façon dont vous prodiguez des soins, le travail que nous faisons est de soutenir tous les aidants naturels.


Le groupe de travail sur le soutien familial :

Pour plus d'informations sur les activités de soutien aux familles du NTG, veuillez contacter


Famille en ligne
Groupe de soutien

1er jeudi de chaque mois

De nombreuses familles       accompagnent leur proche atteint du syndrome de Down ou d'une autre déficience intellectuelle sur la maladie d'Alzheimer (démence) périple.


Cela peut sembler être un chemin solitaire, mais ce n'est pas nécessaire. Rejoignez d'autres aidants familiaux lors de réunions en ligne régulières pour discuter de vos préoccupations, partager vos peurs, vos joies et apprendre. 

Bill and Mary Hogan
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

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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'

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DS-MIG 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. 

DS-MIG 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. DS-MIG is asking families to let their PCP know of the ECHO series and ask them to participate.

For more information and registration:

For questions please contact Emilie Perkins .

NTG-EDSD sample page
Screening & Assessment Resources


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.

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.

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Prise en charge de la régression du syndrome de Down et de la maladie d'Alzheimer/du syndrome de Down

Groupe Facebook privé

Il s'agit d'un groupe de soutien pour les familles de personnes qui ont un diagnostic primaire de syndrome de Down avec un diagnostic supplémentaire de maladie d'Alzheimer ou de régression du syndrome de Down.


Ce groupe a été créé pour fournir un environnement sûr aux familles et à ceux qui s'occupent, soutiennent et aiment les personnes atteintes du syndrome de Down qui subissent une perte de compétences, un comportement difficile important ou d'autres problèmes de santé à la suite de la maladie d'Alzheimer ou de la régression du syndrome de Down.


Pour être considérée comme membre de ce groupe, toute personne qui demande à devenir membre doit répondre de manière approfondie aux trois questions énumérées. Les administrateurs du groupe se réservent le droit de refuser l'adhésion à toute personne qui n'a pas répondu aux questions avec suffisamment d'informations pour s'assurer que le groupe est bien adapté.

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Créer un cercle virtuel d'amis

Formation gratuite de Empowering Ability

Empowering Ability a créé sur la façon d'utiliser la technologie pour développer un "cercle virtuel d'amis" pendant cette période de distanciation sociale et d'isolement.  Un cercle virtuel est un groupe de 6 à 8 personnes qui sont en la vie d'une personne, qui souhaite rester connectée pratiquement chaque semaine alors que la distance physique est un obstacle à la connexion en personne. Un cercle virtuel fournit une connexion sociale quotidienne, soulage la solitude et approfondit les relations. Cette formation est gratuite et se compose de 5 leçons vidéo et d'un manuel PDF de 10 pages.  Bénéficiez de la formation gratuite.

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The Helen Journal

Magazine from the AADMD

Helen: The Journal of Human Exceptionality is a magazine published by the AADMD 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.

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Nouvelles et articles d'intérêt particulier pour les proches aidants.

Notre newsletter pour les aidants est publiée plusieurs  fois par an et contient des articles et des ressources d'intérêt particulier pour les aidants familiaux.

Les articles couvrent une gamme de sujets et de questions sur lesquels les familles ont besoin d'informations à jour, telles que la recherche, la gestion des soins, les ressources et bien plus encore.

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