Caregiving and IDD and Dementia: Report of the Pre-Summit Workgroup on Caregiving and IDD

This report summarizes the findings and recommendations from a pre-summit activity for the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers.  The report was developed by a working group of experts in caregiving, dementia, and intellectual and developmental disabilities (IDD) and organized by the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) in partnership with the Rehabilitation Research and Training Center in Developmental Disabilities and Health at the University of Illinois at Chicago and the Alzheimer’s Association.  The purpose was threefold:
  1. assess the current state of research, policy, and practice, and develop recommendations related to caregiving supports for older adults with intellectual and developmental disabilities;
  2. translate the contributions of these findings to the greater dementia care agenda; and
  3. promote inclusion of issues particularly relevant to intellectual disability and dementia concerns as part of the Summit platform.


The Report examined the foundational similarities and differences in focal areas affecting people with dementia, both with and absent IDD.  Considered were five major areas related to care and caregiving:
(1) family caregiving interventions;
(2) supportive care settings;
(3) effects of diversity;
(4) screening and early detection; and,
(5) bridging service networks.
Recommendations are offered in each of these areas, including how funding and actions might be undertaken and by which federal or non-federal organizations.
Prof. Tamar Heller, RRTCDD Director and chair of this ad hoc working group will be speaking at the Summit, and conveying the workgroup’s recommendations.

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