Among adults with intellectual disability (ID), those with Down syndrome are at the greatest risk for Alzheimer’s disease. Most healthcare providers lack education and training in addressing age-related decline and dementia among adults with ID which in turn can lead to poor care outcomes and reduced patient and family satisfaction.
Individuals with dementia and their caregivers often cannot describe and document the various complex health, behavioral and support needs that they are experiencing. Lack of precision and certainty in providing objective information can result in delivery of imprecise care and challenge measuring the impact of treatment.
The American Academy of Developmental Medicine and Dentistry (AADMD) and 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, Pennsylcania, is developing a serial assessment tool that 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.
Through this two-year project, the tool, the Serial Assessment of Function in Dementia (SAFD), adapted from the NTG-Early Detection and Screen for Dementia (EDSD), will be used to assess the functional decline in adults with ID over time post diagnosis of dementia. The prototype of the SAFD, once validated, has 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.
The Evaluation of an Impact Assessment/Care Tool in Adults with Intellectual Disability and Dementia project has been made possible by a grant from the WITH Foundation.
For more information contact Principal Investigator, Seth Keller, MD, via email at firstname.lastname@example.org.
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 Project continues through today. Fifteen adults with dementia made up the first group, along with 15 adults without dementia living within the community. Fifteen other adults without dementia were 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, eight of the original residents - termed the 'legacy residents' - have died and eight other adults with dementia have joined the study. All told, 23 adults have profited from living in the homes and their stories are included in this study.
Support Group Project
The NTG has joined with the Center on Aging at Temple University to undertake a proof of concept study to observe and assess the impact of the NTG's Social Care Support Groups. The Groups are held via Internet and include family caregivers who are providing primary supports for an adult with an intellectual disability affected by dementia.
For more information, contact Jadene Ransdell
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.