Collaborative Projects

International Summit on Dementia and Intellectual Disability


The National Task Group on Intellectual Disability and Dementia Practices, along with the RRTC DD/H at the University of Illinois at Chicago, together with colleagues in Scotland at the University of the West of Scotland (UWS), the University of Stirling, and Alzheimer’s Scotland, organized an ‘International Summit on Intellectual Disability and Dementia’ geared to developing a major international policy statement on a number of areas related to dementia and adults with ID, including human rights and the CRPD, nomenclature, advanced dementia, end-of-life care practices, aiding family caregivers, community dementia capable care practices, and advocacy for inclusion of persons with ID in national Alzheimer’s plans.


The dates were October 13-14, 2016 and the meeting was held on the UWS-Paisley campus just outside of Glasgow, Scotland.  The event was primarily funded by the RS Macdonald Charitable Trust with additional support from the Scottish Government and Alzheimer Scotland.
The summit participants were academic and organizational colleagues from Europe and North America, including representatives from several international and national dementia and intellectual disability organizations.  The summit was discussion-based and designed to produce a summative report on a number of issues. Individual topic reports/statements are in production — and are posted below when they become available.  Topics covered include:


(1) Human rights and the Convention for Rights of People with Disabilities;
(2) Advancing and advanced dementia;
(4) Community dementia-capable care practices;
(5) End-of-life care and advanced dementia;
(6) Support for family caregivers;
(7) Post-diagnostic support;
(8) Perspective of persons with intellectual disability;


Persons interested in learning more about this international event and its reports should contact Dr. Karen Watchman at  In the US contact Dr. M. Janicki, NTG co-chair [


Inter-organizational Collaborations

The NTG is working collaboration with a number of Alzheimer’s Disease Initiative grantees which are developing and providing specialized services to aid adults with intellectual disability affected by dementia.  These projects include the Seven Hills Rhode Island organization as well as projects in the greater San Diego, California area and in Honolulu, Hawaii.


Early Detection and Screening
A number of efforts have been undertaken or are underway related to the NTG’s early detection and screening initiative.  This includes the development and issuance of the NTG-EDSD, a screening tool used by agencies and families to record health and function information in anticipation of referrals for assessment and diagnosis.


In one effort, the Department of Psychology at the University of Vienna completed a study of the utility of the NTG-EDSD as applied to German-speaking direct care staff.  The study, “Practical Applications of the NTG-EDSD for Screening Adults with Intellectual Disabilities for Dementia: A German-language Version Feasibility Study”, has as its principal authors, Elisabeth Zeilinger of the University of Vienna, Austria ( and Dr.Claudia Gärtner of Theodor Fliedner Stiftung,in Germany. The authors used the German language version of the NTG-EDSD. The study was published in  Journal of Intellectual and Developmental Disability [41(1), 42-49. DOl: 10.3109/13668250.2015.1113238].  For the pre-publication report, click here.


The NTG has organized a NTG-EDSD Users Group which is open to anyone interested in using or who has or is using the instrument.  Access to the NTG-EDSD Users Group is via yahoogroups.


The NTG is also aiding several organizations in using the NTG-EDSD, including broad use in Scotland, and applications in British Columbia outside of the US, and in Rhode Island and Hawaii within the US.  The NTG-EDSD is also in use as a data tool in the national biomarkers and Down syndrome project being funded by the National Institute of Health.


For queries related to the NTG-EDSD contact Dr. Lucy Esralew.


Housing Development
A number organizations have developed new housing for people with intellectual disability who have been diagnosed with dementia. Among them are the Lucanus Organization in Ft. Lauderdale, which has recently opened three new small number of resident homes specifically altered to accommodate adults with dementia. For more information, contact Dr. Thomas Buckley at Another is the Noah Homes, Inc. in San Diego which has just begun development on a purpose-built home for older adults with Down syndrome diagnosed with dementia. For more information, contact Molly Nocon at


Project ECHO

Project ECHO, developed at the University of New Mexico, is a collaborative model of medical education and care management that uses guided practice to exponentially increase workforce capacity to provide best-practice specialty care and reduce health disparities. The NTG is partnering with Project ECHO to deliver specialized ID and dementia consultations to group homes and community providers in rural and underserved areas.  Using basic, widely available, multi-point videoconferencing technology the NTGteleconsulting team, consisting of medical, behavioral, and program experts, serve as mentors and colleagues to conduct virtual clinics with community providers in rural and underserved areas. In this way, community providers, their staff, and affiliated clinicians not only learn to provide excellent dementia specialty care to their clients in their own communities but gain the knowledge and skills to become local experts and an ongoing resource for their communities.  To contact the tele-consulting team and FMI:

Contact Dr. Lucy

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