Advancing Research on Care Needs and Supportive Approaches for Persons With Dementia: Recommendations and Rationale

The first National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers was held on October 16-17, 2017, at the National Institutes of Health. In this paper, participants from the Summit Session on Research on Care Needs and Supportive Approaches for Persons with Dementia summarize the state of the science, identify gaps in knowledge, and offer recommendations to improve science and practice in long-term care. Prior to the National Research Summit, the report notes that a workgroup organized by the National Task Group on Intellectual Disabilities and Dementia Practices, the Rehabilitation Research and Training Center on Developmental Disabilities and Health, and the Alzheimer’s Association examined research gaps and made recommendations pertaining to older adults with ID. Although people with ID face many of the same age-related health issues that people without disabilities face, they may develop health issues at an earlier age. For them, the early signs of dementia are more difficult to diagnose and some have a shorter period of debilitation—especially those with Down syndrome. Also, most adults with ID, including those with dementia, live with parents, many of whom have provided lifelong caregiving. The unique challenges of adults with ID warrant inclusion of these individuals in general studies of dementia care. The National Task Group has developed practice guidelines and a national training curriculum drawing on the dementia and ID fields. Federal efforts can bridge the aging and disability service sectors as exemplified by the Administration on Community Living inclusion of ID in dementia funding. There is a rich literature on career caregivers and family support models in aging and ID that could inform dementia care practices, and also extensive research on general dementia caregiving that has the potential to inform practice in ID. The workgroup recommended conducting comparative effectiveness research to study different integrative support models involving aging and ID networks; increasing research on community programming that supports people living with family caregivers, as well as those living in a variety of supported living and group settings; and including persons with ID and dementia and their families in research on dementia care.

Source: Kolanowski, A., Fortinsky, R. H., Calkins, M., Devanand, D. P., Gould, E., Heller, T., Hodgson, N. A., Kales, H. C., Kaye, J., Lyketsos, C., Resnick, B., Schicker, M., & Zimmerman, S. (2018). Advancing Research on Care Needs and Supportive Approaches for Persons With Dementia: Recommendations and Rationale. Journal of the American Medical Directors Association, 19(12), 1047–1053. https://doi.org/10.1016/j.jamda.2018.07.005