Our mission is to advocate for services and supports for people with intellectual disability and their families who are affected by Alzheimer's disease and dementias.
New and Noteworthy
NTG Issues a Statement of Solidarity with the Ukrainian People and with those Ukrainians with Intellectual Disabilities and Dementia
We recommend that as the world’s support continues to grow, a portion of the support and funds will be dedicated to those Ukrainians who are primary caregivers and who are less likely to be able to safely leave Ukraine. Further, caring for persons who have been displaced and are now or who will be outside of Ukraine also will require special attention. Inconsistent care and supports, change of environment, potential for abuse and neglect, and uncertainty and fear can lead to unpredictable and possibly reactive catastrophic behaviors and worsening of the skills and functions of persons with intellectual disabilities and dementia. In the best of times, assuring equity for vulnerable populations who cannot speak for themselves is difficult. This crisis compounds the difficulty.
Training
U.S. Workshops
Currently Scheduled Workshops
Amarillo, Texas - June 2022
Napa, California - June 15, 16 & 17
Others pending final arrangements
Click here for more information on these workshops, the NTG national training model curriculum, and how to host an NTG workshop in our area.
Wednesday, April 27, 2022
EASPD is hosting a follow-up webinar to the April 1st webinar.
This webinar will focus on how service providers can organize to help host Ukrainians with disabilities.
Download webinar flyer with registration link.
Joint NTG-EASPD efforts on disabilities and the current situation in the Ukraine.
The NTG is collaborating with the EASPD organization in Brussels to undertake an awareness campaign within North America on the current situation for people with disabilities in the Ukraine. Recently, we held a joint webinar (on 1 April) with family members in the Ukraine, as well as European disability agency personnel. We continue to hold discussions related to current situation facing people with intellectual and other disabilities, stemming from the war upon the Ukraine and aiding with the needs of refugees. As new initiatives develop we will post information on our site.
Link to the April 1st webinar recording
Information from EASPD on follow-up actions
US Down Syndrome Coalition Responds to CMS Ruling
The DS Coalition succeeded in having CMS remove discriminatory language from an important healthcare coverage determination that would have excluded people with Down syndrome from clinical trials for a new class of Alzheimer’s drug therapeutics. The next phase of the Coalition's collective advocacy will be focused on supporting
the inclusion of people with Down syndrome in safety trials for upcoming Alzheimer’s drug treatments.
More action is being planned to ensure equity in access to therapeutics to treat Alzheimer's disease in people with Down syndrome and inclusion in drug registries. To read more about the CMS decision and the rationale behind the arguments raised by the Coalition, please go the LuMind IDSC Explainer (issued April 15, 2022) and noted below.
NTG Releases Report on
Cognitive Assessment Barriers
The NTG and the Lumind IDSC Foundation have issued a comprehensive report on the barriers to determining MCI and dementia in adults with neuroatypical conditions, such as acquired brain injury, autism, cerebral palsy, Down syndrome, intellectual disability, serious mental illness, and significant sensory impairments. Developed by an Expert Panel, the report concludes that current federal guidelines for assessing for MCI or dementia do not provide sufficient information to assess such adults.
The Panel recommended broadening federal guidance to include adaptations of assessment practices; expanding training for clinicians about such conditions; and undertaking research to produce more evidence-based information on assessing neuroatypical adults.
The 126 pp report, ‘Examining Adults with Neuroatypical Conditions for MCI/Dementia During Cognitive Impairment Assessments: Report of the Neuroatypical Conditions Expert Consultative Panel,’ can be accessed and downloaded by clicking on the cover image
Canadian Workshops
Click here for more information
on workshops in Canada..
NTG Co-President, Dr. Seth Keller, interviewed at AAN about new section on intellectual and developmental disabilities
Dr. Seth Keller spoke to the new 'Adults with Intellectual and Developmental Disabilities Section' of the American Academy of Neurology (AAN). The goal of this section is providing resources and training to improve the medical care of all age persons who have an intellectual disability, autism, cerebral palsy, Down syndrome, and other neurodevelopmental disabilities.
A key focus of the section is addressing the issue faced when transitioning from a pediatric to the adult medical care world. Many adults face complications, including epilepsy and other seizure disorders, as well as movement disorders and spasticity, that warrant special attention.
Dr. Keller noted that “in older adults, one thing that’s quite prevalent in this group is younger-onset dementia, especially among adults with Down syndrome -- 60% of who may show the symptoms of Alzheimer disease by age 60. It's a real challenge and a tragedy when these difficulties arise in this population.”
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Online
Family Caregiver
Support Group
The NTG offers a free monthly online support group for family members caring for an adult relative with ID and dementia. The support group meets the first Thursday of the month at 8 pm Eastern Time.
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NIA Issues Infographic on
Types of Dementia
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!
Trending Topics
The National Institute on Aging has produced an excellent infographic to help spread the word about the different types of dementia. Click on the image to link to the infographic and further explanatory information
Looking for information on dementia and various conditions, such as autism or cerebral palsy? What about regression syndrome and Down syndrome?
We maintain information pages, offering summaries of recent research, covering these and other related topics.
The NTG-EDSD
For information on the NTG's internationally used dementia screening instrument
COVID 19
Available Now!
An updated COVID-19 and Down Syndrome Resources Guide is now available. Covered is new information on the Delta variant, current safety recommendations, and important updates useful to families, organizations, and adults with Down Syndrome.
T21RS issues statement on safety of COVID vaccinations for adults with Down syndrome
FAQ on Dementia and ID
For the NTG's frequently asked questions document
The 'Thinker Report'
For the NTG's original plan for dementia and intellectual disability
New data available from an international survey of adults with Down syndrome who had received the COVID-19 vaccines showed no adverse effects. The T21RS noted that "vaccines appeared to be safe to use in both young people (12 – 17 years) and adults (18 and older) with Down syndrome."
NTG has paired up with Positive Exposure and created a new educational video, 'Early Onset Alzheimer's Disease in Adults with Down Syndrome'. Underwritten by a modest grant from the WITH Foundation, the video visits several family members who share with us their thoughts about their son or daughter's life and symptoms of early onset dementia. This 10.5 minute video Is now available. Click on the photo below...
COVID-19 & Down Syndrome Resource Consortium issues statement on COVID-19 booster shots
The CDC has recommended, as of September 30, 2021, that adults age 65+ and those age 18+ who live in long-term care settings, have underlying medical conditions, work in high-risk settings, or live in high-risk settings should receive an additional dose of the Pfizer-BioNTech COVID-19 vaccine after the initial 2 doses. Adults 18+ with Down syndrome are specifically noted as at risk and included among adults with 'underlying medical conditions.'
The Consortium's statement reads:
"The COVID-19 & Down Syndrome Consortium supports the CDC’s current guidance that states adults with Down syndrome age 18+ are eligible for a Pfizer COVID-19 booster shot. As adults with Down syndrome are at higher risk for severe illness associated with COVID-19, booster shots should be scheduled as soon as possible six months after their second dose of the Pfizer COVID-19 vaccine.
Recent data show they are more likely than the general population to experience a “breakthrough” COVID-19 infection and/or experience more severe outcomes during a breakthrough infection. A “breakthrough” COVID-19 infection is defined as someone who gets COVID-19 even though they are vaccinated. Please note that adults with Down syndrome who are older and overweight are at higher risk for severe outcomes."
Update - The FDA has approved boosters using the Pfizer, Moderna, or Johnson & Johnson vaccines in the United States. The Moderna vaccine is recommended at 1/2 dosage. Current CDC guidance acknowledges that any of the acceptable vaccines can be used for a booster. Please check with your physician or health care provider for which one would be best for you."
Alzheimer's Medications
NTG issues FAQ on aducanumab and
Down syndrome
'Biomarkers and Therapeutics for People with Down Syndrome and Alzheimer's Disease'
Best Practice Caregiving - Free online database of proven dementia programs for family caregivers (Note - these are not specific to dementia in ID.)
Recorded October 7, 2021
Many people with Down syndrome will show signs of decline as they age, often associated with the presence of Alzheimer's disease. These signs often begin in their early 50s and will affect their lives and health. Worry and concern about this disease and its implications for self-care, supports, health, and quality of life can be very unsettling.
The recent news of new medications that may hold promise in making a difference for persons diagnosed with Alzheimer's disease needs clarification, perspective, and an understanding of how they may help adults with Down syndrome, and possibly adults with other intellectual disabilities.
On Octonber 7th, the NTG assembled a national panel of expert researchers and practitioners in the field of Down syndrome and Alzheimer's disease to engage in a realistic and thoughtful discussion of both current and future therapeutics, matters related to diagnostics, and the emerging research on biomarkers. The content of this webinar is of interest to parents and families, providers, advocates, clinicians, practitioners, and others invested in the future for persons with Down syndrome. If you missed it, click above on WATCH NOW for a private showing.
A comprehensive FAQ has been issued by the NTG's Medical Advisory Group on questions that were raised about Biogen's new medication for treating Alzheimer's disease. "We are glad to make this available to families and providers who have questions and concerns about the use of this new medication," said Dr. Seth Keller, the MAG leader. To access the FAQ
NTG Information Page on New Alzheimer's Medications
The NTG is maintaining a running information page on new medications available to treat Alzheimer's disease, in particular Biogen's aducanumab. To read the history of this medication and new findings click on 'View More'
The organizations noted below have endorsed the NTG statement on Aduhelm. For information please contact Seth Keller, MD.
FDA Approves New Drug for Use with Adults with Alzheimer's Disease
NTG and URI/VCU AgainTeam Up on the Spring 2022 ECHO Series
'Growing Older with Lifelong Intellectual Disabilities: When Dementia is Suspected or Diagnosed'
The Spring 2022 Project ECHO series is a free, practical, case-based education program for health care and social service providers who want to enhance their knowledge, competence, and performance related to the care of people with intellectual and developmental disabilities affected by dementia. Each ECHO session includes a brief presentation by a content expert, case study presentation (submitted by a participant), and an open discussion to teach and learn from one another.
Content experts include Dr. Lucille Esralew (CA), Leslie Udell (MB), Dr. Rick Rader (TN), and Alexi Bonardi (MA).
This series is a collaboration between the NTG and the Geriatric Workforce Enhancement Programs (GWEPs) at the University of Rhode Island and Virginia Commonwealth University and is supported by grants from HRSA to the two universities.
The new series is being offered on April 11 & 25, May 9 & 23, and June 6, 2022. For registration see below
June 7, 2021. The FDA approved Aduhelm to treat patients with early stage Alzheimer’s disease using its accelerated approval pathway. Questions have been raised whether the drug can help adults with Down syndrome and adults with other intellectual disabilities. The NTG joined with several other interested organizations to examine the scientific and clinical basis for this and has opened discussions with Biogen.
The NTG, along with the organizations noted below, developed a statement related to the use of Aduhelm. As no adults with Down syndrome were included in the original clinical trials, it has been noted that this medication is not appropriate for use by adults with Down syndrome until more information is forthcoming. Biogen, the drug's developer, has advised against prescribing Aduhelm for use by adults with Down syndrome.
Much has transpired in the short time since the FDA conditionally approved aducanumab for use with a select population of adults affected by Alzheimer's disease. Issues have arisen about the approval process, about clinical appropriateness for atypical populations, about its safety, about the cost of the drug and whether the cost will be covered by insurers, and about its efficacy in improving cognitive function.
NEW! Expert Panel on Appropriate Use Recommendations for Prescribing Aducanumab has issued a comprehensive article for use of Aduhelm, which includes recommendation "against treating Down syndrome patients with aducanumab until more data are available."
For current information and updates on Aduhelm and its use please go to our Aduhelm Information page.
There is no cost for participating; however, advance registration is required.
An extensive bibliography is available on a range of published studies, articles, videos, guides, etc., on care management and adults with intellectual disability associated with older age and neuropathologies, such as dementia. Articles and 'grey' materials are included along with abstracts and sourcing.
Congress Considering the CHANGE Act (H.R. 3354) (S.1692)
The Concentrating on High-Value Alzheimer’s Needs to Get to an End (CHANGE) Act is designed to strengthen dementia detection and diagnosis and to direct CMS to require use of relevant cognitive impairment detection tools as identified by the National Institute on Aging for use during Medicare's annual wellness visits (AWV). The NTG is negotiating for the inclusion of detection tools spefically appropriate for assessing adults with intellectual disability.
Clinical Guidelines
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."
For a PDF copy of the expanded Global Down Syndrome Foundation version.
Cognitive Assessment
CMS Issues Guidance and Payment Codes for Cognitive Impairment Assessment as Part of the Annual Wellness Visit
CMS has issued new guidance for Cognitive Assessment and Care Plan Services. These assessments are to help detect cognitive impairment as part of a routine visit through direct observation or by considering information from the patient, family, friends, caregivers, and others.
CMS notes that clinicians may also use a brief cognitive test and evaluate health disparities, chronic conditions, and other factors that contribute to increased risk of cognitive impairment. If the clinician detects cognitive impairment at an AWV or other routine visit, he or she may perform a more detailed cognitive assessment and develop a care plan.
This additional evaluation is necessary to diagnose a person with dementia, such as Alzheimer’s disease, and to identify treatable causes or co-occurring conditions such as depression or anxiety. Missing from the extensive guidance is a stipulation for augmenting the assessment for persons with pre-existing cognitive impairments, such as intellectual disability. The NTG is working toward addressing this omission.