Welcome to The NTG
The NTG is a not-for-profit organization charged with ensuring that the interests of adults with intellectual and developmental disabilities who are affected by Alzheimer’s disease and other causes of dementia - as well as their families and friends – are taken into account.
Our mission is to advocate for services and supports for people with intellectual disability who are affected by Alzheimer’s disease and dementias and for their families.
Confrères
NTG News
NTG and LuMind IDSC Issue Advisory on Prescribing Criteria for Alzheimer's Therapeutics
The NTG, the LuMind IDSC Foundation, and an international blue ribbon expert panel produced an advisory on adapting drug formulary committed criteria by States so that adults with Down syndrome (and other intellectual disabilities) can be prescribed FDA approved Alzheimer's disease anti-amyloid immunotherapeutics, once they are authorized for use by adults with Down syndrome.
NTG Welcomes the Support of the Peter J. Charitable Trust
The NTG is pleased to recognize the generous support of the Peter J. Taylor Charitable Trust in support of its family assistance and information efforts. New initiatives are underway to expand our focus on supporting families, which include maintaining an on-line monthly support group for caregivers, a new series of informative webinars, and increased involvement in producing family-friendly materials.
NTG Undertaking Major Webinar Series for Families
The NTG's Family Support Program has organized a major webinar series to begin in February 2024 to provide key information for families, people with intellectual disability, and others within their support networks. The series is based on the results on a national survey undertaken in mid-2023 to assess information desired by caregivers. Information on registration (the webinars will be offered at no cost) will be available shortly.
NTG Submits Recommendations to NIA/AA on New Alzheimer's Disease Clinical Guidelines
The National Institute on Aging and the Alzheimer’s Association (NIA-AA) draft diagnostic guideline on diagnosing Alzheimer’s disease was issued at the 2023 AAIC Conference in Amsterdam, NL, with a request for comments. The NTG submitted comments that lauded the work of the NIA/AA and proposed that the guideline offer more attention to diagnosing Alzheimer's disease in adults with intellectual disabilities and furthering research on biomarkers in adults with other than Down syndrome. To see an Explainer. A subsequent, revised, version was issued by the Alzheimer's Association at the Clinical Trials on Alzheimer's Disease (CTAD) conference on Oct. 25, 2023, with a call for further comments. The LuMind IDSC Foundation and the NTG submitted a joint comment. To see Nov. 16th submission.
NTG is working with the Gerontological Society of America to Create a 'Companion' to its KAER Toolkit on Intellectual Disability and Dementia
The NTG, provider organizations in Ohio, and the GSA are collaborating in producing a first companion to the GSA's renown KAER Toolkit. The new companion, to be available by the GSA's November Conference in Tampa, will specifically focus on issues relevant to intellectual disability and dementia, providing guidance for health workers, support personnel, and caregivers. The companion will be accompanied by various media products making the information more available to a broader audience.
NTG Issues Advisory on Settings Rule and Dementia Housing
The NTG has issued a public policy advisory on applications of the CMS 'Settings Rule; with applications to community-based housing for adults with intellectual disability living with dementia. The advisory covers that adaptations agencies could use to provide HCBS supports in small dementia capable group homes and designing person-centered care plans.
NTG Issues Advisory on Over-medication
The NTG, jointly with the Health Matters Program at the University of Illinois Chicago, issued an advisory on risk reduction and brain health by moderating over-medication among adults with intellectual disability. The advisory, designed to promote healthy brain outcomes, recognizes that over-medicating can have negative effects on physical and brain health, as well as potentially can increase the risk for mild cognitive impairment or dementia. The information provided is intended to lead to a constructive scrutiny of medication use, avoid “medication harm’, and result in positive health outcomes.
Project ECHO Series on Dementia and Intellectual Disability
NTG and URI/VCU have concluded the Fall 2023 program of their 2023-24 ECHO Series. Planning is underway for the Spring 2024 program. This annual ECHO series is offered twice a year, is free, and is a practical, case-based /education program for health care and social service providers who want to enhance their knowledge, capabilities, and performance related to the care of people with intellectual and developmental disabilities affected by dementia. The ECHO partners have issued a look-back at the past four years of their program. Information on the look-back and the Spring series can be found on the ECHO page.
ID & Dementia Project in Texas!
The NTG has partnered with the University of Texas Health Science Center at Houston to undertake a five-year project funded by the Texas Council on Developmental Disabilities to expand awareness and services for adults with intellectual disability living with dementia. See the project website for current and pending events and activities.
NTG Involved in 2nd International Summit on ID and Dementia
The NTG was a partner in the recently held 2nd International Summit on Intellectual Disabilities and Dementia, held on October 24-25, 2023 in Toronto, Ontario Canada. The Summit was part of the 50th Anniversary Celebration of the Reena Organization. Reports from the Summit will be forthcoming and noted on the NTG website. One outcome from the Summit was the founding of the Summit Secretariat, which will be hosted by the NTG.
Upcoming Trainings and Workshops
NTG Training & Education
The NTG offers training workshops on intellectual disability and dementia, in the US and Canada. These renowned workshops are based on the NTG's evidence-informed curriculum modules on various topics related to intellectual disability and dementia.
NTG's ECHO education series is a free, practical, case-based education program for health care and social service providers who want to enhance their knowledge, capabilities, and performance related to the care of people with intellectual and developmental disabilities affected by dementia.
NTG Family Support
The NTG is committed to family caregivers, as well as direct service professionals, who support individuals with intellectual disability and dementia. We recognize that many family members provide direct, day-to-day care to their loved one, while others are involved indirectly. No matter how you provide care, the work we do is in support of all family caregivers.
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.
NTG Training & Education
Publications Library
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. Go to our full library to filter into categories that interest you.
Featured Publications
click on image to open PDF
My Thinker's Not Working
Resource document
Physician's Quick Guide for Using the NTG-EDSD
Resource document
Examining Adults with Neuroatypical Conditions for MCI/Dementia During Cognitive Impairment Assessments: Report of the Neuroatypical Conditions Expert Consultative Panel
Resource document
FAQ on Dementia and ID
Resource document
Community Care and Supports for People with Intellectual Disabilities Affected by Dementia
Resource document
Bibliography on Dementia Care Management and Intellectual Disability
Working bibliography
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