2017 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers
The NTG sponsored a pre-Summit activity for the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers that was held on the NIH campus on October 16-17, 2017. The pre-Summit activity focused on various aspects of family caregiving in dementia and intellectual disability and was led by Prof. Tamar Heller of the University of Illinois at Chicago. A workgroup of prominent researchers in the area of family caregiving and intellectual disability was assembled and were asked to develop a background paper on caregiver practices and supports to be used at the Summit. The Workgroup report details the work group processes, membership, background issues, and recommendations.
To view the NTG workgroup report
To view the report of the NIH Summit
To view the Report of the NIH Summit to the federal NAPA Advisory Council
A journal version of the report was published following the Summit (See: Heller, T. Scott, H.M, Janicki, M.P., and Pre-Summit Workgroup on Caregiving and Intellectual/Developmental Disabilities. Caregiving, intellectual disability, and dementia: Report of the Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities. Alzheimer's & Dementia: Translational Research & Clinical Interventions, 2018, 4(4), 272-282. DOI: https://doi.org/10.1016/j.trci.2018.06.002)
Abstract: 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. 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. 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. 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.