National Task Group develops materials/resources for dementia care or people with IDD

Kathleen M. Bishop, PhD
University of Rochester

Similar to the general population, adults with Intellectual and/or Developmental Disability (IDD) are growing older in larger numbers and have the same risk for diseases such as Alzheimer's type dementia. For adults with Down syndrome the risk is higher than in the general population with an increased likelihood of earlier onset of symptoms including cognitive and functioning loss. Less is known about dementia in adults with IDD. Due to previous research many health care providers assume all adults with Down syndrome will experience the symptoms of Alzheimer's; however, this assumption has been challenged by more recent research.

What did you do in your research?
The authors came together to develop resources and materials on dementia and IDD specifically for caregivers. The intent is to develop caregiver health care advocacy skills to apply in partnership with health care providers’ to make sure appropriate differential diagnoses are conducted on all adults with IDD when dementia is suspected. This is especially important for adults with Down syndrome who experience higher risk for Alzheimer's but also have a higher risk for other age-related diseases that need to be ruled out and when possible, treated.

What did you find out?
Using applied research from the current information available, the National Task Group on ID Dementia Practices (NTG) has developed materials and resources including training to address the lack of knowledge and health care advocacy skills. It has been found to be a major need around the country and there are many organizations that will be co-sponsoring training initiatives on dementia and IDD with the NTG.

What are the take-home messages?
As the need for training and resources on this topic continue to grow across the country and around the world, applied research is needed to develop training and resources on the following:

    To learn more about these findings contact Seth Keller. For training materials, articles, and screening tools please visit Project Website.

    Full Journal Article
    Bishop, K.M., Hogan, M., Janicki, M.P., Keller, S.M., Lucchino, R., Mughal, D.T., Perkins, E.A., Singh, B.K., Service, K., Wolfson, S. and the Health Planning Work Group of the National Task Group on Intellectual Disabilities and Dementia Practices. (2015). Guidelines for Dementia-Related Health Advocacy for Adults With Intellectual Disability and Dementia: National Task Group on Intellectual Disabilities and Dementia Practices. Intellectual and Developmental Disabilities, 53(1), 2-29.