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Dementia Care Planning & the EDSD

Dementia care planning is a process that involves assessing the state of an individual who has been diagnosed with dementia and then considering what care and support practices should be implemented to help compensate for any losses or challenges being experienced. 

The NTG-EDSD can be an useful device for collective discussions and dementia care planning involving families and care providers.  The assessment information derived from the NTG-EDSD and augmented by input from family members, care staff, and clinicians, as well as input from the person with an intellectual disability  can be used to help identity strengths and challenges, as well as a health or medical areas that warrant surveillance. This composite information can then provide the basis for an individualize dementia care plan.

Educational Presentations on the NTG-EDSD

A presentation in March 2020 by Dr. Lucy Esralew, of NTG's Board of Directors and Chair of the NTG's Scientific Consultative Panel, explains its basis and how it can be applied via a set of informative slides.  Click here to access her first presentation.

A second presentation in April 2024 by Dr. Esralew expanded on the use of the NTG-EDSD and covers how the information can be used effectively in dementia care planning.  Click here to access this second presentation.

Dementia Care Planning Resources

Addressing Brain Health in Adults with Intellectual Disabilities and Developmental Disabilities: A Companion to the KAER Toolkit for Primary Care Providers.

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The NTG collaborated with the Gerontological Society of America to create a companion toolkit to the GSA's KAER Toolkit for Primary Care Teams: Supporting Conversations About Brain Health, Timely Detection of Cognitive Impairment, and Accurate Diagnosis of Dementia.  The Companion to the main Toolkit was developed to address the fact that certain groups of individuals with intellectual and developmental disabilities develop dementia at rates like older adults in the general population. However, adults with certain conditions, such as Down syndrome, develop Alzheimer's disease at greater rates. They also recognized the unique challenges in assessing dementia in this group of adults.  The Companion covers strategies that primary care teams and others can use to improve detection of dementia and care and services for adults with intellectual and developmental disabilities. 


This new toolkit companion complements the GSA KAER Toolkit for Primary Care Teams, and, together with the other KAER toolkits, is available at

The goals of the KAER IDD Companion are to:

•   Raise awareness of unique needs of adults with intellectual and developmental disabilities.
•   Equip and encourage caregivers and health care teams to engage in appropriate brain health conversations with adults with intellectual and developmental disabilities.
•   Promote brain health conversations and early detection of changes in cognitive and adaptive function for adults with intellectual and developmental disabilities.
•   Assist with the identification of community supports and resource networks aimed at enhancing function and quality of life for adults with dementia and intellectual and developmental disabilities.

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