National Task Group on Intellectual Disabilities and Dementia Practices

 

WELCOME TO THE NTG

The ‘NTG’ is a coalition charged with ensuring that the interests of adults with intellectual and developmental disabilities who are affected by Alzheimer’s disease and related dementias – as well as their families and friends – are taken into account as part of the National Plan to Address Alzheimer’s Disease.

We produce materials related to dementia, including practice guidelines, screening tools, education and training curricula and workshops, agency and family-based information, and other technical materials – as well provide technical assistance.

The NTG is affiliated with the American Academy of Developmental Medicine and Dentistry and the Rehabilitation Research and Training Center on Developmental Disabilities and Health at the University of Illinois at Chicago and other partners, such as various university centers and the Gerontology Division of the AAIDD.  Read more about us.

The NTG is a member of LEAD - 'Leaders Engaged on Alzheimer's Disease' - a Washington-based coalition working to focus attention on Alzheimer’s disease and related disorders.

The chairs of the NTG are Matthew P. Janicki, Ph.D. and Seth M. Keller, MD.

 


“I can think of no other disease that has such a profound effect on loss of function, loss of independence, and the need for care. I can think of no other disease so deeply dreaded by anyone who wants to age gracefully and with dignity. I can think of no other disease that places such a heavy burden on families, communities, and societies. I can think of no other disease where innovation, including breakthrough discoveries to develop a cure, is so badly needed.” 

          Dr Margaret Chan, Director-General of the World Health Organization, opening remarks at the First WHO Ministerial Conference on Global Action Against Dementia, Geneva, March 15. 2015 (Alzheimer’s Disease International/ADI,World Alzheimer’s Report,  2015).


 

NTG CONFERENCES AND EVENTS

Florida APD and DEA notes NTG workshop held in Tallahassee

>  Upcoming NTG "Dementia Capable Care of Adults with Intellectual Disabilities and Dementia" Workshops:  For more information and to register online please visit our workshop page.

Potsdam, NY - November 1-2 & 3, 2017

St. Louis, MO - December 4-5 & 6, 2017

Spokane, WA - February 2018

Queens (Oakland Gardens), NY - May 7-8 & 9, 2018

Seattle, WA - June 25-26 & 27, 2018

Others pending

> Upcoming NTG workshop on screening, assessment, and diagnosing dementia in adults with intellectual disability.

Seattle, WA - June 27, 2018

 

> Webinars 

Registration is now open for the NTG's 2017 Dementia-Capable Care of Adults with Intellectual Disability Webinar Series.  

To view the schedule please click here.

 

NTG members also are involved in webinars sponsored by various organizations

'Aging and Dementia Care for People with Intellectual Disabilities' - was presented on February 16, 2017 and sponsored by The Arc 

 Play recording (1 hr 4 min)    [Please open this in a browser other than Microsoft Edge]

   
> Special Trainings by NTG Senior Members

           See presentation on aging and dementia by Dr. Kathleen Bishop at The Arc Leadership Conference in St. Louis, Missouri

 

>  NDSS-NTG-National Alliance of Caregiving Conference

SAVE THE DATE!!!

The 2018 NDSS Adult Down Syndrome Summit for family caregivers of aging and older adults with Down syndrome and for parents, siblings and other family members, will be held on April 9-10, 2018 in Arlington, Virginia at the Westin Hotel.  The Summit is co-sponsored by the NDSS and NTG, with aid from the National Allliance for Caregiving.  FMI:  contact the NTG at ntgfamilyadvocate@gmail.com    Information on the Summit is available at www.ndss.org.

        

>  AADMD/NTG Conferences

The 5th annual conference of the NTG will be held on Friday, June 29, 2018, as part of the AADMD Conference (which will be held June 29-30 and July 1), but will have a distinct one-day registration.  The venue will be the Marriott Seattle Waterfront Hotel.  A NTG two-day dementia and intellectual disability workshop will be held on Monday and Tuesday, June 25th and 26th. and an NTG collaborative community forum on dementia and intellectual disability will be held on Thursday, June 28th at the SEA-TAC Airport Conference Room.  More information on these events is forthcoming. Information about the conference can be found at www.aadmd.org/conference.

NEW!  Call for papers for the June 29th NTG Conference Day will be issued by November 30th!

The  4th annual conference  was held  June 2-4, 2017  at the Cooley Center of the Dental School of the University of Texas-Houston on the campus of the Houston Medical Center in Houston, Texas.  The NTG hosted a plenary session on dementia and Down syndrome on Saturday, June 4th, with key speaker, Dr. Ann-Charlotte ("Lotta") Granholm-Bentley, the founding executive director of the Knoebel Institute for Healthy Aging at the University of Denver.  For abstracts of  the full program, which contains NTG related conference sessions.

The 3rd annual NTG conference was held July 8-10, 2016 at the Swissotel Chicago, Illinois, as part of the annual conference of the American Academy on Developmental Medicine and Dentistry. For abstracts of NTG conference sessions. 

Read about our previous conferences.
 

The NTG partnered with Dr. Karen Watchman and colleagues at the University of Stirling and the University of the West of Scotland and conducted an 'international summit' on intellectual disability and dementia that was held on October 13-14, 2016 in Glasgow, Scotland.  For more information and to review copies of the Summit reports.

 

>Congresssional testimony

Dr. Tamar Heller of the University of Illinois at Chicago gave testimony before the Senate Committee on Aging on October 25, 2017.  Her testimony addressed a number of issues facing older adults with intellectual and developmental disabilities, including the challenges caused by Alzheimer's disease and other causes of dementia.  She acknowledged the work of the National Task Group and its work with the National Plan to Address Alzheimer's Disease, as well as the numerous guides and publications created by the NTG to educate providers, help families, and guide service providers.  For the full testimony.

 

>New Informational articles

"Dementia among individuals with intellectual and developmental disabilities: Policies and practices", is a recently published article by Kate Gordon in Generations (Fall 2017, pp 30-36), that examines the current state of federal programs supporting older adults with intellectual disability affected by dementia.  Ms. Gordon notes "Aging and disability service systems must build greater capacity to provide services to an increasing number of aging persons with lifelong disabilities. People living in community who have intellectual and developmental disabilities develop age-related health problems, including dementia. They and their caregivers need access to dementia-capable home- and community-based services. Through the support of public policies and dementia-specific grants from the Administration on Aging, within the Administration for Community Living, promising practices in developing dementia-capable systems of care are emerging nationwide."

 

>Education and Training Workshops

Since 2015, the NTG Education and Training Team has held some 30 workshops on dementia and intellectual disability in 17 states, with over 1300 support workers and other professionals attending.  These workshops have also provided hands-on training experience to over 500 local staff development personnel who now used the NTG Dementia and ID curriculum for agency-based in-service.  The NTG offers this national series of two- and three-day workshops on dementia and intellectual disability for staff of provider agencies, program personnel, administrators, and caregivers, as well as specialty workshops (e.g,.Screening, Assessment & NTG-EDSD).  For information and the complete schedule.  Contact Dr. Kathie Bishop for scheduling a workshop.

 

>Upcoming NTG Related Events

Pending

 

NATIONAL ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES

NTG Public Comments

April 29, 2016      August 1, 2016      October 31, 2016       February 3, 2017      July 28, 2017*

Note: no comments were provided at the Apirl 17, 2017 NAPA Council meeting

*July 28 - video times: 07:45 to 18:57

 

FAMILY SUPPORT NETWORK

 

NOW AVAILABLE! - CAREGIVER NEWS - Vol. 1, No. 4

CAREGIVER NEWS - Vol 1, No 3

CAREGIVER NEWS - Vol 1, No 2

CAREGIVER NEWS - Vol 1, No 1

The NTG sponsors an on-line support group network for family caregivers which meets periodically.  To read more and to join in…

 

NTG PRODUCTS

The NTG has produced and issued a number of products and publications, including an universal early detection and screening instrument -- the NTG-EDSD.  For a complete list of various language versions and to download copies go here.

The NTG prodiuced a resource guide for caregivers of adults with intellectual disability and dementia for the Seven Hills Rhode Island organization. A copy of the guide can be viewed and downloaded here.

 

PENDING ACTIVITIES

> NTG work with the Seven Hills Rhode Island (7HRI) organization as part of their Administration on Community Living's Alzhiemer's Disease Initiatives (ADI) grant.

To continue the progress being made by 7HRI in Year 2 of its ADI grant, the NTG has committed to work with 7HRI in Year 3 to enhance the caregiver resource guide (developed by the NTG in Year 2 and noted in the above section) by adding at least two additional sections, one on explaining dementia that can enable persons with intellectual disability serves as advocates and another as a guide for medical personnel when interacting and examining adults with intellectual disability suspected of having or having been diagnosed with dementia.  The NTG expects to engage Rhode Island residents with intellectual disability to advise us on the content and format of the first section, and engage local health practitioners to aid us with developing the second section. The NTG will also provide two NTG dementia and intellectual disability two-day workshops (one in October 2017 and one in May 2018); these will be accompanied by a consultative day for trainers who plan to use the materials to further train personnel at their agencies. The NTG also will provide one or more “Grand Round” opportunities involving NTG affiliated medical specialists who will provide time at medical facilities to be chosen by 7HRI.  Additionally, the NTG will continue to provide consultation and technical assistance to 7HRI and provide participation at the 7HRI's grant project meetings and other efforts.  Lastly, the NTG will aid 7HRI with mounting a ‘capstone’ conference in early-to-mid 2018, where the efforts of the 7HRI's grant activities will be showcased, along with involving other providers who will share their experiences in serving adults with intellectual disability affected by dementia. We see these collective efforts adding value to the overall project activities of the 7HRI grant and having a lasting impact on Rhode Island’s ability to provide supports for adults with intellectual disability at risk of, or affected by, dementia.

> NTG and the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers

The NTG sponsored a pre-Summit activity on family caregiving in dementia and intellectual disability.  Prof. Tamar Heller of the University of Illinois at Chicago led a workgroup of prominent researchers in the area of family caregiving and intellectual disability and they developed a background paper on caregiver practices and supports to be used at the Summit.  The workgroup report is available here. The NIH Summit will be held on the NIH campus on October 16-17, 2017.   

> Building a network of NTG-EDSD users. FMI: Dr. Lucy Esralew

The NTG has set up a NTG-EDSD Users Group.  To receive an invitation to join the group, send an email to ntgedsd@aol.com and provide your name, affiliation, contact information, and interest in NTG-EDSD.  One item under discussion is whether any amendments are needed to the NTG-EDSDThe screening form has been in use for several years and several users have offered some suggestions for changes and additions.  The NTG is evaluating the suggestions with the intent to issue a version 2.0.  One concern raised was the omission of height and weight data that can be used to determine BMI.   Users are advised to include these data when using the current version of the form.  

> HCBS Settings Rule and Dementia Services

The NTG is in communication with CMS over interpretative aspects of the HCBS 'settings' rule as it applies to supports and services for persons with intellectual disability affected by dementia.  Many questions have arisen over State regulatory authority interpretations of the rule and its application to small dementia-capable group home settings.  Although CMS has not issued a definitive interpretation of the application of the 'settings' rule to these settings, it has issued various documents, FAQs, and interpretative letters applying to selective aspects of the 'setting' rule to dementia care supports that have application to intellectual disability.  The NTG has offered to provide a resource page listing existing CMS and related issuances so as to provide a resource to States and providers on this topic.  To see the current list of available CMS and related materials.

> Practice guidelines on in-community dementia residences

A NTG working group, associated with the International Summit on Intellectual Disability and Dementia, is developing a Summit statement and guidance on enabling quality residential environments for dementia supports (including group home and family home settings).  The Department of Occupational Therapy at Thomas Jefferson University is aiding this effort.  More information will be forthcoming

> Collaborating with the Down Syndrome Medical Interest Group (USA) Workgroup on 'Regression and Down Syndrome'

The Down Syndrome Medical Interest Group (USA) is investigating a phenomenon referred to as ‘regression’ in adolescents and young age adults with Down syndrome.  This phenomenon is characterized by unexplained rapid clinical deterioration in cognitive, adaptive and behavioral functioning.  Little is known about its etiology, but the phenomenon is troubling as it leads to loss of basic skills within a very short period (usually within six months), decompensation of function, and significant loss of speech.  Prior to onset, persons affected show little or no clinical symptoms.  [A recent article in the American Journal of Medical Genetics (Jacobs et al., 2016, AJMD, Part A 9999A:1-4) describes some of the aspects of this phenomenon and proposes a model for a systematic approach for evaluating affected individuals.]  The NTG has been in discussions with the Regression Workgroup of the DS MED IG about whether any of persons affected may have a form of early onset dementia.  Dr. Brian Chicoine is the leader of the Workgroup.

> Aid in recruitment for the national NIH funded biomarkers and Down syndrome study

The National Institutes of Health has funded at $37M study of Biomarkers of Alzheimer’s Disease in Adults with Down Syndrome Initiative.  The funding is helping support two research teams that will pool data and standardize procedures, increase sample size, and collectively analyze data that will be made widely available to the research community. One of the teams, headed up by Dr. Nicole Schupf, is composed of investigators from the Columbia University Medical Center in New York City, the Kennedy Krieger Institute/Johns Hopkins University in Baltimore, Massachusetts General Hospital/Harvard University in Boston, and the University of North Texas Health Science Center in Fort Worth. The teams will employ an array of biomarkers to identify and monitor Alzheimer’s-related brain and cognition changes in Down syndrome volunteers 25 and older. The NTG’s screening instrument - the NTG-EDSD – is one of instruments that will be used in the study. Once the recruitment materials clear the IRB process, the NTG will aid the Initiative with alerting families and others to the study and seeking their involvement as participants.  For more information.

> Informational booklet on Alzheimer's disease and Down syndrome

The NTG collaborated with the National Down Syndrome Society and the Alzheimer's Association and developed a booklet useful to parents and other caregivers on Alzheimer's disease and related dementias and Down syndrome.  The project team was led by Dr. Julie Moran of the NTG.  The project is coordinated by the NDSS and the booklet will be issued in November 2017. 

> DS-Connect

The NTG is in discussion with the NIH Down Syndrome Working Group's DS-Connect to see how the NTG network might be helpful to the DS-Connect registry effort.  FMI: DS-Connect

Revised 11/1/17

NTG GOVERNANCE

The NTG is managed by a steering committee composed of the following NTG members: Matthew P. Janicki, Ph.D. and Seth M. Keller, M.D. (Co-chairs); Kathleen Bishop, Ph.D., Nicole Cadovius, Melissa Disipio, Lucille Esralew, Ph.D., Lawrence T. Force, Ph.D., Andrew Griffin, Ph.D., Eileen Herge, Ph.D., Mary Hogan, Nancy Jokinen, Ph.D., Ronald Lucchino, Ph.D., Philip McCallion, Ph.D., Julie Moran, D.O., Dawna Torres Mughal, Ph.D., Leone Murphy, Lin Nelson, Ph.D., Kathryn Pears, Rick Rader, M.D., Mike Rafii, M.D., Kathy Service, FNPBaldev Singh, M.D., Kathy Srsic-Stoehr, Helen Stepowany, and Sara Weir.

A full membership list, including Steering Committee members, is available here.

The NTG is an affiliate within the structure of the American Academy on Developmental Medicine and Dentistry (www.aadmd.org)

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