Serial Assessment of Function in Dementia​ - SAFD


Dementia is a prevalent older age outcome among many adults with Down syndrome. Among adults with other forms of intellectual disability (ID) dementia is less prevalent, but still occurs generally at norm with the general population.  Unfortunately, many, if not most, healthcare providers lack exposure 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.  For this reason the NTG developed the NTG-EDSD as a first-instance screening instrument, permitting family and staff to identify observed features that might signify the presences of symptoms of MCI or dementia.  However, as the NTG-EDSD's purpose was to serve as that first-instance screen, many practitioners asked for an instrument that would permit them to track progressive changes and decline, assess effects of medications, and have objective verification of interventions. For this reason, the NTG began work on an instrument which serve this purpose.


The NTG, in partnership with the Department of Occupational Therapy at Thomas Jefferson University in Philadelphia, Pennsylvania, began 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 medical care.  A grant was secured from the WITH Foundation for a two-year development project, to adapt the NTG-EDSD into the Serial Assessment of Function in Dementia (SAFD). Its purpose would be to assess the functional decline in adults with ID over time post diagnosis of dementia.  The prototype of the SAFD was validated during this development period.  The next step is to test its application and utility in real-life clinical settings.  It is felt that the SAFD 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