I'd like to take this opportunity to welcome five new members to the NTG's Family Support Committee.  Colleen Hatcher (Chief of Staff at NDSS) and Nancy Murray (parent and Senior Vice President of ACHIEVA and President The Arc of Greater Pittsburgh at ACHIEVA) are two new board members who have joined us.  We also welcome three members from our NTG member family. They are Brooke Heinrich (a sibling and member of the monthly virtual Family Support Group), and Marianne Iverson (Director of Teen & Adult Services of Down Syndrome Connection of the Bay Area), and Mary Merriman (a member of the monthly virtual Family Support Group and a sibling).

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We welcome their involvement and leadership and look forward to working together with the common goal of helping families who have a loved one with an intellectual disability and cognitive decline/dementia.

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Marianne Barbera

Committee Chair

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For more information about the Committee and becoming part of our efforts please email familysupport@the-ntg.org.

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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DS-MIG has opened its ECHO series to clinicians who have people with Down syndrome as primary care patients. 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.

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The first session will be held Wednesday, April 19, 2023 at 4 PM Central. For more information and registration: https://adscresources.advocatehealth.com/assets/1/6/23DSMIG_Project_Echo_Outreach_FINAL_(marketing).pdf

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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.

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.

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Click here to join our Facebook group (not affiliated with The NTG).

Empowering Ability has created on how to use technology to develop a "virtual circle of friends" during this time of social distancing and isolation.  A virtual circle is a group of 6 to 8 people that are in a person’s life, who want to stay connected virtually every week while physical distance is a barrier to in-person connection. A Virtual Circle provides daily social connection, lifts loneliness, and deepens relationships.This training is free and consists of 5 video lessons and a 10 page PDF workbook.  Get the free training.

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.

Our caregiver newsletter was published several times a year up until 2020 and contains articles and resources of particular interest to family caregivers.

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Articles cover a range of topics and issues that families need up-to-date information on such as research, managing care, resources, and much more.

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To view and download copies of past newsletters please click here.