Projects

SAFD Project
Evaluation of an Impact Assessment/Care Tool in Adults with Intellectual Disability and Dementia
 
The National Task Group on Intellectual Disabilities and Dementia Practices (NTG), in partnership with the Department of Occupational Therapy at Thomas Jefferson University in Philadelphia, Pennsylvania, receive a grant to develop and variation of the NTG-EDSD which could be used for serial assessments and which can be completed by caregivers of adults with ID and dementia and shared with their healthcare providers to assist in the care and management of their dementia over the course of this debilitation condition. 

During the two-year grant period the tool, the Serial Assessment of Function in Dementia (SAFD), adapted from the NTG-Early Detection and Screen for Dementia (EDSD), was used to assess the functional decline in adults with ID over time post diagnosis of dementia. It was expected that the prototype of the SAFD, validated via this project, would have the potential to enhance community health care provider’s ability to more effectively evaluate treatment decisions and follow-up care and improve health care outcomes to this underserved population. Release of the results is still pending.

The project was made possible by a grant from the WITH Foundation.

For more information contact Principal Investigator, Seth Keller, MD, via email at sethkeller@aol.com

Wichita Project

The Wichita Project is a longitudinal observational study of one grouping of specialty group homes designed to provide long-term community based care and supports for adults with intellectual disability affected by dementia. The homes were purpose built a cluster arrangement and sited within a residential neighborhood in Wichita, Kansas. There were three homes, each providing a place to live for five adults.

Begun in 2011, the Wichita Project continues through today. Fifteen adults with dementia made up the first group, along with 15 adults without dementia living within the community (included for comparison purposes).

The study was undertaken to observe the long-term gains from such group home living and to be able to describe the effects of dementia on the adults at the homes.

 

Since 2010, nine of the original residents - termed the 'legacy residents' - have died and eight other adults with dementia have joined the study. All told, 31 adults have profited from living in the homes and their stories are included in this study.

Read more.

Glasgow ID and Dementia Summit

The NTG co-sponsored the 2016 International Summit on ID and Dementia which was held in Glasgow, Scotland (October 13-14, 2016).

The NTG partnered with Dr. Karen Watchman and colleagues at the University of Stirling and the University of the West of Scotland to coordinate and conduct an 'international summit' on intellectual disability and dementia.

 

A series of professional papers have been published covering a range of topics discussed at the Summit. 

 

For more information and to read copies of the Summit reports. 

 

For a list of published articles.