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
FDA approves new drug for use with adults with Alzheimer's disease
On June 7, 2021, the FDA approved Aduhelm to treat patients with 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 has 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, has developed a statement related to the use of Aduhelm. At this time, as no adults with Down syndrome were included in the clinical trials, it is not clear whether this medication is appropriate for use by adults with Down syndrome until more information is forthcoming.
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.
July 2021 Webinar
Our July 20th webinar was focused on how to create a Life Story book. Our presenters, Erica DeFrancesco and Anna Carlson from LiveWell described their Legacy Storyteller Program, an initiative that paired college students with persons living with dementia to capture their life stories. At the end of the program, the individuals living with dementia were gifted their life story book which captured their legacy. Webinar participants heard how the students were selected and how they were taught to create their books so that listeners could apply this program within their own settings.
FMI - contact Kathryn Pears
Join the NTG
The organizations noted below have endorsed the NTG statement on Aduhelm. If your organization would like to support this initiative please contact Seth Keller, MD.
NTG members receive exclusive benefits... including discounted workshop and webinar registrations, networking opportunities, and much more. Click on the link above for more information and to join online.
Individuals - $50 annual dues
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Organizational Memberships Also Available!
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.
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.
CMS Issues New Rules for COVID-19 Vaccination Requirements 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 Leaders to Cover Aduhelm Issues at ACCSES Annual Conference
Seth Keller, Matthew Janicki, and Kathryn Service will participate on a panel on "What Does the FDA Approval of Aduhelm Mean for Individuals with Down Syndrome?" The session will be held at 4pm EDT on August 5th. Discussed will be a 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.
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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 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
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.
CDC Considers Down Syndrome as a High Risk Condition 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.
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.
NTG Board member volunteers at Massachusetts vaccination site
The NTG lauds Board member, Kathryn P. Service, a nurse practitioner, for helping residents of Western Massachusetts with obtaining their COVID-19 vaccine inoculations. Ms. Service is also active in providing aid to families and adults with intellectual disability in Massachusetts.
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."
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.
NTG Activities, Updates & New Challenges
As the spread of COVID-19 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 is working to again provide in-person workshops and meetings. To this end our education team is going full speed planning for new workshops in 2021 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 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.