Family Support
Advocacy for the Needs of Families
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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NTG Family Support Activities
Family Support Committee
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:
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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
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Facilitates the first inclusive monthly national online support group for family caregivers
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Assists individuals and organizations to develop local in-person and online support groups
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Offers access to the Family Caregiver Newsletter archives from 2017 to 2020
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Provides advice and technical assistance to recipients of federal grants and research projects
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Contributes to publications and guides on intellectual disability and dementia
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Participates in a Facebook group for caregivers and professionals supporting individuals with Down syndrome and Alzheimer’s disease
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Collaborates with NDSS on its Adult Summits and other meetings on topics of common interest
For more information about the NTG's family support activities please contact familysupport@the-ntg.org.
NTG's Family Support Committee
A message from the Chair
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).
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.
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.
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'
DS-MIG Opens ECHO Program for Practitioners Aiding Families
First ECHO scheduled for April 19, 2023
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. 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.
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
For questions please contact Emilie Perkins EPerkins@raybourn.com .
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 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.
For more information, 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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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).
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.
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.
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.