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Apoyo familiar

Cuidar de un ser querido que tiene síndrome de Down y Alzheimer u otra demencia puede ser uno de los mayores desafíos a los que nos enfrentamos. 

¡No tenemos que hacerlo solos! 

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 Defensores de las necesidades de las familias

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 Defensores de las necesidades de las familias

Grupo de trabajo de apoyo familiar

El NTG está comprometido con los cuidadores familiares, así como con los profesionales de servicio directo, que apoyan a las personas con discapacidad intelectual y demencia. Reconocemos que muchos miembros de la familia brindan atención diaria directa a su ser querido, mientras que otros están involucrados indirectamente. No importa cómo brinde atención, el trabajo que hacemos es en apoyo de todos los cuidadores familiares.


El Grupo de Trabajo de Apoyo Familiar:

Para obtener más información sobre las actividades de apoyo familiar de NTG, comuníquese con


Familia en línea
Grupo de apoyo

1er jueves de cada mes

Son muchas las familias que acompañan a su ser querido con Síndrome de Down u otra Discapacidad Intelectual (Demencia por Alzheimer)     viaje.


Puede sentirse como un camino solitario, pero no tiene por qué ser así. Únase a otros cuidadores familiares en reuniones en línea programadas regularmente para discutir sus inquietudes, compartir sus miedos, sus alegrías y aprender. 

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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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Apoyo para la regresión del síndrome de Down y la enfermedad de Alzheimer/síndrome de Down

Grupo privado de Facebook

Este es un grupo de apoyo para familias de personas que tienen un diagnóstico primario de síndrome de Down con un diagnóstico adicional de Alzheimer o síndrome de Down regresivo.


Este grupo fue creado para brindar un entorno seguro para las familias y las personas que cuidan, apoyan y aman a las personas con síndrome de Down que experimentan una pérdida de habilidades, un comportamiento difícil significativo u otros problemas de salud como resultado de la enfermedad de Alzheimer o la regresión del síndrome de Down.


Para ser considerado para ser miembro de este grupo, cualquier persona que solicite ser miembro debe responder detalladamente las tres preguntas enumeradas. Los administradores del grupo se reservan el derecho de rechazar la membresía a cualquier persona que no haya respondido las preguntas con suficiente información para garantizar que el grupo encaje bien.

Image by LinkedIn Sales Solutions
Crear un círculo virtual de amigos

Entrenamiento gratuito de Empowering Ability

Empowering Ability ha creado sobre cómo usar la tecnología para desarrollar un "círculo virtual de amigos" durante este tiempo de distanciamiento social y aislamiento.  Un círculo virtual es un grupo de 6 a 8 personas que están en la vida de una persona, que quiere estar conectada virtualmente todas las semanas, mientras que la distancia física es una barrera para la conexión en persona. Un círculo virtual brinda conexión social diaria, elimina la soledad y profundiza las relaciones. Esta capacitación es gratuita y consta de 5 lecciones en video y un libro de trabajo en PDF de 10 páginas.  Obtenga la capacitación gratuita.

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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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Boletin informativo

Noticias y artículos de especial interés para los cuidadores familiares.

Nuestro boletín informativo para cuidadores se publica varias  veces al año y contiene artículos y recursos de especial interés para los cuidadores familiares.

Los artículos cubren una variedad de temas y problemas sobre los que las familias necesitan información actualizada, como investigación, administración de la atención, recursos y mucho más.

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