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. 

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. 

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For more information about the online support group or how to join the monthly meetings please email familysupport@the-ntg.org.

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.

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Some useful resources that are available from the federal government...

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US Food & Drug Administration's 'Alzheimer's Disease'

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National Institute on Aging's 'Alzheimer's Disease & Related Dementias'

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Centers for Disease Control and Prevention's 'Alzheimer’s Disease and Related Dementias'

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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. 

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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.

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For more information and registration: https://www.dsmig-usa.org/project-echo

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For questions please contact Emilie Perkins EPerkins@raybourn.com .

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. 

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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.

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For more information on our webnsite, go to our NTG-EDSD page.

The NTG has compiled a list of publications and news articles that are helpful to family caregivers. 

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To browse through this list, go to our Family Caregiver Resources page.

The NTG has compiled a full library of publications concerning Alzheimer's or other dementias as they relate to adults with intellectual disabilities. 

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To browse through our library, go to our Publications page.

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.

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.

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.

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

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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.