Caregiving, intellectual disability, and dementia: Report of the Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities

Introduction: A specially commissioned working group produced a report on caregiving, intellectual and developmental disabilities (IDDs), and dementia for the National Institutes of Health-located National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers.

Methods: Experts in caregiving, dementia, and IDDs examined the current state of research, policy, and practice related to caregiving and supports; identified the similarities and dissimilarities between IDD-related care and services and the general population affected by dementia; and considered how these findings might contribute to the conversation on developing a dementia care research and services development agenda.

Results: Five major areas related to programs and caregiving were assessed: (1) challenges of dementia; (2) family caregiving interventions; (3) supportive care settings; (4) effects of diversity; and (5) bridging service networks of aging and disability.

Discussion: Recommendations included increasing supports for caregivers of adults with IDDs and dementia; increasing research on community living settings and including caregivers of persons with IDDs in dementia research; acknowledging cultural values and practice diversity in caregiving; increasing screening for dementia and raising awareness; and leveraging integration of aging and disability networks.