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."
Alzheimers.gov adds information on intellectual disability and NTG
National Institutes of Health website on Alzheimer's has added information and links to federal resources about intellectual disability.
To access Alzheimers.gov
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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.
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.
NTG Issues a Statement on Equity Related to COVID-19 and Adults with Intellectual Disability and Dementia
The NTG's statement addresses COVID-19 when dementia is diagnosed in adults with intellectual disability and focuses on the implications for equity in infection mitigation and access to vaccinations.
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
For Global Down Syndrome Foundation as produced a tracker which offers readers to get up-to-date state-by-state vaccination policies for adults with Down syndrome... 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.
NTG and NDSS sign interorganizational agreement!
On March 15, 2021, the National Down Syndrome Society (NDSS) and the NTG completed a 'memorandum of understanding' - agreeing to collaborate and cooperate on issues and activities related to older adults with Down syndrome. We have agreed to share educational materials, work toward common goals related to legislation and policy, and collaborate on workshops, webinars, and conferences
CDC COVID-19 Guidance Regarding Individuals with Disabilities
The CDC recently released new guidances regarding COVID-19 related to individuals with disabilities.
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 Guidance for Adult Day Services Centers
The guidance promotes a range of preventative behaviors and facility practices in adult day services settings, including guidelines on hygiene, building operations, shared spaces and transport. The guidance:
suggests limiting nonessential services and visitors, like volunteers and family members and it encourages health screenings, signage encouraging the practice of preventative measures like wearing a mask and social distancing, modifying facilities’ layouts, and isolating staff and participants with symptoms or who may have had close contact with someone with COVID-19.
offers a protocol for isolating and transporting an individual with symptoms, as well as guidance on notifying health officials and close contact.
suggests staggering activities and meals, as well as creating pods for center participants and they suggest serving individually plated meals or grab and go meals instead of self-serve options.
NTG Bibliography on COVID-19 and Intellectual Disability (updated)
The NTG, in conjunction with the HealthMatters Program at the University of Illinois at Chicago, 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. Newer articles relate to research on the after-effects or residual of COVID-19. The resource contains any known published works currently known addressing this topic.
To access the most recent PDF version, click here.
NTG Co-Chair's Comments to Federal Advisory Council on Alzheimer's
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.
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."
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 April 2021, the NTG introduced a new membership structure for persons and agencies/organizations wishing affiliate with us. Membership information and 'joining up' process is now posted on this site.
As the pandemic continues and even as increasingly more persons are vaccinated, we strongly recommend that everyone follow the recommendations of the CDC to stay safe, get vaccinated, and follow sound pandemic hygiene practices.