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.
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New and Noteworthy
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.
NEW!
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."
NTG issues new FAQ on aducanumab and Down syndrome
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.
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'
FREE WEBINAR - December 9
NTG's National Dementia Workshop Offerings
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. The 10 minute video will be available soon.
'Biomarkers and Therapeutics for People with Down Syndrome and Alzheimer's Disease'
Watch the Recording
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.
Webinar Co-sponsors
FDA approves new drug for use with adults with Alzheimer's disease
On 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.
The organizations noted below have endorsed the NTG statement on Aduhelm. If your organization also would like to support this initiative please contact Seth Keller, MD.
NTG and Lumind IDSC Foundation team up to produce guidance for examining neuroatypical adults
The project, associated with the LINC-AD NIH grant effort, assembled an expert panel to examine current guidance and advisories provided by federal agencies, specifically the NIH and CMS regarding measures and protocols for undertaking assessments and whether the guidance and advisories considered groups of adults with neuroatypical presentations. The expert panel examined and specified what special considerations need to be given by practitioners when examining adults with select neuroatypical (e.g., intellectual disabilities, brain injury, severe mental illness) and neurodivergent (e.g., autism/ASD, sensory impairments) conditions with the intent to provide guidance and recommendations to CMS and NIA on adding information to previously issued statements. A draft of the report is in progress and the NTG/Lumind expect to issue a report in early 2022. FMI - contact the NTG
NTG and URI/VCU Team Up on Fall 2021 ECHO 'Webinar' Series on 'Growing Older with Lifelong Intellectual Disabilities: When Dementia is Suspected or Diagnosed'
This 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.
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.
NTG members, Seth Keller, Kathleen Bishop, and Kathryn Service are among the speakers. Dr. Karen Watchman from the University of Sterling in Scotland will offer a presentation on 'How to communicate with peers about a fellow resident who has dementia.' For specific topic information see 'For more information' or click on the image above.
The fall series began on October 18th and will run every other week through to December 13th. There is no cost for participating; however, advance registration is required.
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CDC launches COVID-19 resources for people with intellectual and developmental disabilities
The CDC has created a COVID-19 toolkit with communication resources explaining in plain language how people with intellectual disability and caregivers can protect themselves from the virus.
The toolkit contains social stories, videos, posters, and interactive activities that focus on five topics: Getting a COVID-19 vaccine; Wearing a mask; Social distancing; Hand washing; and Getting a COVID-19 test. There is also a tip sheet for caregivers that offers suggestions for things they can do to ease their loved one’s worries about the virus.
Visit CDC’s full suite of COVID-19 materials for people with intellectual disability and their caregivers at COVID-19 Materials for People with Intellectual and Developmental Disabilities and Care Providers | CDC
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!
CMS Issues Guidance and Payment Codes for Cognitive Impairment Assessment as Part of the Annual Wellness Visit
NTG Leaders Spoke to Aduhelm Issues at ACCSES 2021 Annual Conference
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.
Seth Keller, Kathryn Service, and Matthew Janicki participated on a panel on "What Does the FDA Approval of Aduhelm Mean for Individuals with Down Syndrome?" Discussed were number of unresolved issues regarding the use of Aduhelm to treat Alzheimer's disease in people with Down syndrome and the recommendations noted in the recent report from the NTG Aduhelm and Down Syndrome Medical Advisory Group. To see the presentation PowerPoints.
NTG and NDSS sign interorganizational agreement!
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.
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 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:
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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.
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offers a protocol for isolating and transporting an individual with symptoms, as well as guidance on notifying health officials and close contact.
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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.
Alzheimers.gov adds information on intellectual disability and NTG
The National Institutes of Health website on Alzheimer's Disease has added information and links to federal resources about intellectual disability.
To access Alzheimers.gov
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.
CMS Issues New Rules for COVID-19 Vaccination Requirements in ICFs-IID
CMS has issued an interim final rule which has updated the infection control requirements that long-term care (LTC) facilities (Medicaid nursing facilities and Medicare skilled nursing facilities, also collectively known as “nursing homes”) and intermediate care facilities for individuals with intellectual disabilities (ICFs-IID) must meet to participate in the Medicare and Medicaid programs.
Designed to reduce the spread of COVID-19, the rule requires education about COVID-19 vaccines for LTC facility residents, ICF-IID clients, and staff serving both populations, and by requiring that such vaccines, when available, be offered to all residents, clients, and staff. It also requires LTC facilities to report COVID-19 vaccination status of residents and staff to the Centers for Disease Control and Prevention (CDC).
CMS has noted that although current requirements should ensure that ICFs-IID provide residents with a COVID-19 vaccine, it posited that it does not address vaccine education. CMS believes that the unprecedented risks associated with the COVID-19 warrant direct attention. Also, ICFs-IID have not historically been required to participate in national reporting programs to the extent that other health care facilities have.
Despite the limited data available regarding COVID-19 cases or outbreak in ICFs-IID, CMS recognizes the unique concerns for these facilities and their residents and staff. They note that CDC has established COVID-19 infection, prevention, and control guidance specific to group homes for individuals with disabilities and recently released an updated guidance on vaccination and sub-prioritization discusses this.
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.
An extensive bibliography 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.
NTG Co-Chair's Comments to Federal Advisory Council on Alzheimer's (NAPA)
Dr. Seth M. Keller addressed the federal Advisory Council on Alzheimer's Research, Care and Services on July 19, 2021 and spoke about the concerns the intellectual disability and Down syndrome communities have about the potential applications of Biogen's new Alzheimer's disease medication to persons with Down syndrome.
He noted the need for safety studies to determine what may be adverse effects from the use of the medication by adults with Down syndrome and the need for standardized protocols for determining suitability and eligibility of adults with Down syndrome with Alzheimer's disease for having the medication prescribed. He asked the Council for due consideration of these issues in any deliberations related to the use of aducanumab.
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.
NTG Canadian Consortium Offered a Dementia
and Intellectual Disability Training Workshop for Agencies in Ontario!
For information about the course and future offerings
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.
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.
What's New at the NTG?
As the spread of COVID-19 in highly vaccinated areas slowly abates, but some areas continues to be a public health concern, we recognize that it still poses a particular risk for people with intellectual disability – especially for those diagnosed with Alzheimer’s disease or with other causes of dementia. Even with the lifting of most mitigation controls we are aware that the work to help families and adults with dementia can not slow down. With current progress in mitigation, the NTG has again begun providing in-person workshops and meetings -- check our schedule of up-coming events. To this end our education team is going full speed planning for new workshops for the 2021-22 education season and offering a range of webinars and other distance learning modes – to help keep information flowing.
The NTG continues to collaborate with our colleagues in the Down syndrome and broader disability community to update information about COVID-19 and its impact on people with intellectual disability. Updated information and 'resource guides', in both English and Spanish, can accessed on our site -- which contains an informational page for COVID-19 resources. As vaccination efforts have created a safer America, we still strongly recommend that everyone follow the recommendations of the CDC to get vaccinated, remain cautious, and follow sound pandemic hygiene practices.
The NTG is now a collaborating partner with the CDC BOLD Healthy Brain Collaborative via a grant awarded to the Health Matters Program at the University of Illinois at Chicago by the Centers for Disease Control. The Collaborative, involving multiple organizations and universities is undertaking a five-year project on raising awareness about brain health and reducing risk of dementia in adults. The University of Illinois project is focusing on brain health in adults with intellectual disability.
As of July 2020, the NTG is chartered as a not-for-profit corporation under the laws of the State of Maine. The NTG is now an independent body governed by its own Board of Directors. We have a cooperative agreement with the National Down Syndrome Society and remain in a cooperative affiliation with the American Academy for Developmental Medicine and Dentistry.
In 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.
New challenges and opportunities continue to keep us engaged. The recent approval of a new medication to treat Alzheimer's disease has come with optimism and unknowns. Teaming up with other organizations we are working to provide more information about the utility of new medications and treatments that can help persons affected Alzheimer's disease and other causes of dementia.