Viability of a Dementia Advocacy Effort for Adults with Intellectual Disability: Using a National Task Group Approach

Journal of Policy and Practice in Intellectual Disabilities
Volume 11 Number 3 pp 176–191 September 2014

Matthew P. Janicki and Seth M. Keller
The World Health Organization’s report, Dementia: A Public Health Priority, noted that the number of people worldwide affected by dementia is significant and will continue to increase. The report called on nations to address dementia by developing national plans and undertaking public health initiatives. Special mention was made of the situation of people with intellectual dis- ability, some of who manifest high risk for dementias. In the United States, the National Task Group on Intellectual Disabilities and Dementia Practices (the “NTG”) was created to ensure that the needs and interests of adults with intellectual and developmental disability who are affected by Alzheimer’s disease and related dementias—as well as their families and friends—are taken into account as part of general-population dementia health and public policy efforts, particularly as noted in the U.S. National Plan to Address Alzheimer’s Disease. To this end, the NTG’s multifaceted advocacy efforts have included (1) identifying best practices for providing care and services to affected adults with intellectual disability; (2) developing and identifying a functional workable administrative dementia early detection and screening instrument; (3) producing educational materials useful to families, adults with intellectual disability, and nongovernmental organizations; and (4) furthering public policy initiatives on dementia as they affect adults with intellectual disabilities. This article describes the origins of this group, its functions and accomplishments, as well its role with respect to national dementia advocacy, as a prototype for other national efforts that can be used to promote the interests of adults with intellectual disability affected by dementia and improve the quality of their lives. Suggested are means for replication of such an effort in other national environments.

doi: 10.1111/jppi.12085