National Alzheimer’s Project: HHS Needs to Better Assess and Communicate Progress

Summary

What GAO Found One in three older Americans dies with Alzheimer’s disease or a related dementia. A 2011 law created the National Alzheimer’s Project, which has been reauthorized through 2035. The Department of Health and Human Services (HHS) has led the National Alzheimer’s Project, which encompasses a range of federal agencies and activities to address Alzheimer’s disease and related dementias. The law did not provide appropriations for the project. The project has contributed to numerous key achievements in combatting Alzheimer’s disease and related dementias. For example, research related to the project has led to the first two approved treatments aimed at slowing disease progression for early-stage Alzheimer’s disease. The project also contributed to areas such as diagnostic testing and risk reduction, among others. An Advisory Council was established as part of the project to develop recommendations to HHS and others to improve project efforts. HHS provides periodic updates on recent federal actions informed by some of these recommendations, but having more detailed information on the implementation status of individual recommendations would help the council identify remaining gaps and focus future recommendations to improve project efforts. HHS collects updates on agency efforts to assess the project’s progress. While HHS has set long-term goals for the project, such as reducing risk of Alzheimer’s, it has not followed other key practices for performance management. Specifically: Setting near-term goals: HHS has not set near-term goals in alignment with the project’s long-term goals (e.g., reducing risk of Alzheimer’s disease). Near-term goals are tangible, measurable results that the agency expects the National Alzheimer’s Project to achieve. Setting project-level near-term goals would help HHS assess the progress of the project as a whole. Information collection and use: Without near-term goals, HHS is unable to collect the information needed to assess progress and inform management decisions to adjust project efforts, as appropriate. Furthermore, HHS cannot effectively communicate progress to project stakeholders. HHS officials noted that resource constraints may make it challenging to follow these key practices. However, doing so would help HHS more effectively assess its progress towards the project’s goals, determine whether and where changes may be necessary, and more clearly communicate the results of this assessment. Clearly communicating the extent of progress would in turn help stakeholders better understand the returns on federal investments in the project and is particularly important given that the project is spread across multiple agencies and activities. Why GAO Did This Study The number of individuals with Alzheimer’s and related dementias in the U.S. is expected to nearly double by 2050. GAO was asked to review the National Alzheimer’s Project. This report describes the project’s achievements to date and examines HHS efforts to provide updates on council recommendations and assess project progress. To do this work, GAO reviewed HHS project documentation, including HHS’s updates to the National Plan and Advisory Council recommendations. GAO interviewed HHS officials and recent non-federal members of the Advisory Council, selected based on factors including their background and role on the council. GAO also interviewed non-federal stakeholders engaged in this issue, including groups representing health care providers, state aging and disability agencies, caregivers, and patients. GAO also evaluated project efforts against GAO’s prior work on key practices for performance management.