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Family Support

Caring for a loved one who has an intellectual disability, including Down syndrome, and Alzheimer's or another dementia can be one of the greatest challenges we face. 

We do not have to do it alone! 

NTG Advocates for the Needs of Families

Family Support Workgroup

The NTG is committed to family caregivers, as well as direct service professionals, who support individuals with intellectual disability and dementia. We recognize that many family members provide direct, day-to-day care to their loved one, while others are involved indirectly. No matter how you provide care, the work we do supports all family caregivers.

 

The Family Support Committee:

  • Provides written and in-person public comments on various federal issues, including to the National Alzheimer’s Project Act Advisory Council and the RAISE Family Caregiver Advisory Council

  • Facilitates the first inclusive monthly national online support group for family caregivers  

  • Assists individuals and organizations to develop local in-person and online support groups

  • Offers access to the Family Caregiver Newsletter archives from 2017 to 2020

  • Provides advice and technical assistance to recipients of federal grants and research projects

  • Contributes to publications and guides on intellectual disability and dementia

  • Participates in a Facebook group for caregivers and professionals supporting individuals with Down syndrome and Alzheimer’s disease

  • Collaborates with NDSS on its Adult Summits and other meetings on areas of common interest

For more information about the NTG's family support activities please contact familysupport@the-ntg.org.

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NTG's Family Support Committee

A message from the Chair

I'd like to take this opportunity to welcome four 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).

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.

Marianne Barbera

Committee Chair

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

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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 familysupport@the-ntg.org.

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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 family 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 but is helpful to those pertinent discussions with a physician and with person-centered dementia care planning by families and care providers. 

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

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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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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 our Facebook group (not affiliated with The NTG).

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Create a Virtual Circle of Friends

Free training from Empowering Ability

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.

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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 more.

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Caregiver Newsletter

News and articles of special interest to family caregivers.

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

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.

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

Helen
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