Clinical Guidelines for Medical Care of Adults with Down Syndrome
The Global Down Syndrome Foundation underwrote and led a broad interdisciplinary effort to create guidelines for medical care of adults with Down syndrome, including considerations for assessing and treating dementia. An abbreviated version of the guidelines has been published in a recent issue of JAMA.
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."
NTG Supports Equity in Access to New COVID-19 Vaccines
With the roll-out of the national COVID-19 vaccination program, concerns have been raised related to equity of access for adults with intellectual disability. The NTG supports in principle the general COVID-19 Vaccine Allocation Principles as issued by the Consortium for Citizens with Disabilities. However, as the government's plan is to first inoculate residents of long term care facilities and associated workers, numerous US intellectual disability and Down syndrome associations and organizations have also issued a statement promoting equity in access to COVID-19 vaccinations by adults with intellectual disability living in other than long terms care settings, including group homes and home-based care. A collective of disability organizations, along with the AADMD, has issued a statement regarding such equity in access to COVID-19 vaccinations. An endorsement of the statement was made by the National Council on Disability.
The NTG has also issued a statement on COVID-19 when dementia is diagnosed in adults with intellectual disability and the implications for equity in infection mitigation and access to vaccinations.
For more information on the distribution of the vaccine and involvement of the disability community, see Frequently Asked Questions (FAQ): COVID-19 Vaccine Distribution Considerations for the Disability Community issued by the AUCD.
What Are State Policies on Vaccination Priorities?
The Center for Public Representation (CPR) has issued a backgrounder on vaccine/inoculation priorities related to persons with intellectual disability and other related conditions. States are now working to prioritize groups within each state stemming from guidance issued by the CDC. A number have put persons with intellectual disability with the early receiver categories.
To access your state's policy statement, click here
State and Territory Frameworks and Resources
For information on specific state policies, ANCOR is maintaining a working list... access here
NDSS Issues advisory on COVID-19 Vaccinations and Down Syndrome
'COVID-19 Vaccine Roll-Out Recommendations for People with Down Syndrome', issued by the NDSS, covers a number of issues that parents and others should be aware and use to advocate within their state.
CDC Adds Down Syndrome to High Risk Conditions for COVID-19
The CDC has noted that adults of any age with certain underlying medical conditions are at increased risk for severe illness from the virus that causes COVID-19. Severe illness from COVID-19 is defined as hospitalization, admission to the ICU, intubation or mechanical ventilation, or death. The CDC has added adults with Down syndrome to the list of conditions are at increased risk of severe illness from the virus that causes COVID-19. To access the page describing this situation and accompanying materials, click here.
Sign up for Emails from the NTG
Sign up for periodic NTG E-News Blasts! 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. The best way to stay up-to-date on all things ID and dementia!
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.
CDC Issues New Advisory
This guidance covers updated recommendation for prevention and mitigation of community transmission of COVID-19.
NTG Bibliography on COVID-19 and Intellectual Disability (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.
Researcher seeking families to join study on dementia caregiving
A study team at Eastern Michigan University is undertaking a study of the lived experiences and quality of life of caregivers of adults with intellectual disability and dementia. Dr. Chistina Marsack-Topolewski, the project's director, is seeking parents and others who would share information about their caregiving experiences.
Persons interested in participating can get more information here.
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."
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.
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
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.
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 of January 2021, the NTG is introducing a new membership structure for persons and agencies/organizations wishing affiliate with US. Membership information and 'joining up' process will be posted shortly on this site.
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.