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Clinical Guidelines for Medical Care of Adults with Down Syndrome

Global Down Syndrome underwrote a broad interdisciplinary effort to develop guidelines for medical care of adults with Down syndrome, including considerations for assessing and treating dementia. 

Based on an analysis of a significant number of published studies, 14 recommendations and four statements of good practice were developed. Overall, the evidence base was limited. Only one strong recommendation was formulated: screening for Alzheimer-type dementia starting at age 40 years.

 

Four recommendations (managing risk factors for cardiovascular disease and stroke prevention, screening for obesity, and evaluation for secondary causes of osteoporosis) agreed with existing guidance for individuals without Down syndrome. Two recommendations for diabetes screening recommend earlier initiation of screening and at shorter intervals given the high prevalence and earlier onset in adults with Down syndrome.

Recommendation 4 of the guidelines notes that "Medical professionals should assess adults with Down syndrome and interview primary caregivers about changes from baseline function annually, beginning at age 40 years. Decline in six domains specified by the National Task Group–Early Detection Screen for Dementia (NTG-EDSD) should be used to identify early-stage age-related Alzheimer-type dementia, a potentially reversible medical condition, or both."

The Guidelines appear in a recent issue of JAMA 

For background on the Guidelines.

NTG Supports Equity in Access to New COVID-19 Vaccines

The NTG supports the COVID-19 Vaccine Allocation Principles as issued by the Consortium for Citizens with Disabilities and is advocating for equity in access to COVID-19 vaccinations by adults with intellectual disability living in other than long terms care settings, including adults affected by dementia and their caregivers.

CDC COVID-19 Guidance Regarding Individuals with Disabilities 

The CDC recently released new guidances regarding COVID-19 related to individuals with disabilities. The guidances includes information and resources for direct services providers, group homes, and other entities that work with people with disabilities (including intellectual disability). Information in these guidances includes precautions that direct service providers can take to protect themselves and the people they work with, strategies for group homes to address staffing shortages, and other helpful tips.

 

  • Click here for guidance for direct service providers.

  • Click here for guidance for group homes for individuals with disabilities.

 

  • Click here for guidance for direct service providers, caregivers, parents, and people with developmental and behavioral disorders.

 

  • Click here for guidance for people with developmental and behavioral disorder.

 

These guides are also featured on CDC's COVID-19 Federal Guidance Page. See also various CDC sites for updates and new material.

NTG Bibliography on COVID-19 and Intellectual Disabilities  (updated)

The NTG in conjunction with the HealthMatters Program at the University of Illinois at Chicago has assembled an annotated bibliography of articles and web resources on COVID-19 and intellectual disability.  Many of the articles relate to issues facing families and organizations coping with caregiving and providing supports.  The resource contains any known published works in English to date addressing this topic.   To access a PDF version, click here.

NTG Co-Chair's Comments to Federal Advisory Council on Alzheimer's  

Dr. Seth M. Keller addressed the federal Advisory Council on Alzheimer's Research, Care and Services on November 9, 2020 and spoke the continuing effort to aid with and advocate for the healthcare needs of adults with intellectual disability affected by dementia. He proposed that the NTG's VISION 2021 call for action would spell out the means of addressing these needs and called for the Council's support. 

To access the text of the comments, click here.

New and Noteworthy

Biomarkers reveal early evolution of Alzheimer's in Down

European researchers have noted biomarkers linked to early evolution, by some 20 years, of Alzheimer's in adults with Down syndrome.  They report that their biomarker study characterizes the natural history of Alzheimer’s disease in adults with Down syndrome and shows the "sequential changes in biomarkers over decades, as well as progressive cognitive impairment." 

To read the article.

NTG Contributed to 2020 Alzheimer Europe Conference 

AE's October 2020 program on post-diagnostic supports included a NTG presentation on community dementia-capable group homes.

Read more...

NDSS and LuMind Submit Research Plan on Down Syndrome and AD to NIH

LuMind IDSC and NDSS jointly submitted to NIH a comprehensive plan for advancing medical research to improve the health and well-being of individuals with Down syndrome, including a focus on dementia. NTG members participated in the plan's workgroups

To read the recommendations...

NTG Teams Up With the University of Illinois on CDC funded brain health project

The NTG joins with the University of Illinois at Chicago's HealthMatters Program to carry out a national COVID-19 and ID development project.  Drs. Jasmina Sisirak and Beth Marks with the HealthMatters Program at the University of Illinois at Chicago were recently awarded a grant from the US Center for Disease Control and Prevention as part of CDC's healthy brain initiative. The grant is designed to expand information, raise awareness, and educate personnel on diminution of occurrences of dementia in people with intellectual disability.

Read more...

NTG Activities Updates & Coronavirus

The impact of COVID-19 continues to be profound and it poses a particular risk for people with intellectual disability – especially for those diagnosed with Alzheimer’s disease or with other causes of dementia. We know that in these times, we can't slow down our work to help families and adults with dementia. Even though the NTG has suspended providing our in-person workshops and meetings, our education team is going full speed planning for webinars and other distance learning modes – to help keep information flowing.

The NTG joined colleagues in the Down syndrome community to help produce several iterations of a Q & A on COVID-19 and Down syndrome.  Several items in the Q & A concern older adults affected by dementia. The expanded Q & A and its brief version can be accessed on our site.  We have also set up a page for COVID-19 links to other resources. Version 3.0 of Q & A was issued in July 2020, and another update is pending.

We collaborated with ACCSES on a national provider survey to determine the impact of COVID-19 on re-entry processes and day-to-day operations, as well as have been aiding in an international study being undertaken by the T21RS organization to examine the clinical aspects of COVID-19 upon adults with Down syndrome.  We are also an active partner on a grant awarded to the Health Matters Program at the University of Illinois at Chicago by the Centers for Disease Control to undertake a five-year project on raising awareness about brain health and reducing risk of dementia in adults with intellectual disability.

In July 2020, the NTG was chartered as a not-for-profit corporation under the laws of the State of Maine.  Since then we have transitioned as a independent body with our own Board of Directors.

As the pandemic continues, we strongly recommend that everyone follow the recommendations of the CDC to stay safe, exercise caution with respect to being exposed to COVID-19, wash and sanitize hands, wear a mask, and keep that 6-foot distance from others. 

Join the NTG

Become an 'Associate' member of the NTG. By doing so, you will become part of the premier national organization advocating for the services and supports so important to adults with intellectual disability and dementia You'll also have access to the very latest information, educational opportunities, and be able to make your voice heard with opportunities to tell policymakers what you think.  There is no cost to join at this time.

     National Task Group on Intellectual Disabilities and Dementia Practices. © 2020                           www.the-ntg.org                                                       Edited 12/3/20

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