Improving Care for Populations Disproportionally Affected by Alzheimer’s Disease and Related Dementias. Methodology


The Task Force began its work in July 2012 and includes representative federal agencies engaged in dementia issues and with specific populations within HHS, the U.S. Department of Veterans Affairs (VA) and U.S. Department of Education (DoE). A list of federal Task Force agencies within these departments appears in Appendix A.

The initial Task Force meetings included a review of the inventory of federal activities prepared to inform the 2012 National Plan. After this review, the Task Force pursued four priority areas identified within the National Plan: (1) accurate and timely diagnosis; (2) access to care; (3) education on Alzheimer's disease and related dementias for practitioners who do not normally specialize in care for people with Alzheimer's disease and related dementias; and (4) special considerations for these populations. The Task Force members also identified steps to gathering additional information and volunteered to seek additional input from experts within and outside the Federal Government. Outside expertise came from "listening sessions" as well as through email and telephone consultation. The Task Force generated ideas about sources of expertise, and identified specific contacts.

The leadership of the Task Force sent guidance to each member to ensure that collection of input was consistent. That guidance included a memorandum to members describing the data collection process, a list of potential contacts, a log to record from whom input was sought and when; and a draft memorandum to external experts, which provided a basic script to ensure consistency in requesting input (see Appendix B). Task Force members solicited input from September 1 through October 8, 2012, through a variety of mechanisms including face-to-face and telephone conference listening sessions with groups and individuals, email submissions, and interviews. The Task Force reconvened in mid-October 2012 to summarize input gathered by the members and discuss possible gaps. Members also offered information based on their own training and expertise. The Task Force developed a list of broad recommendations based on the input it received. Below appears a description of the input process for each of the three specific populations identified in the National Plan, followed by a summary of the recommendations.

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