State surveillance of dementing illnesses: perspective and workshop recommendations

Abstract

Dementias are a large and growing health problem as measured by prevalence and economic/social burden. Prior efforts in the prevention and treatment of dementia have focused on clinical and basic science research, but growing public awareness and support have spurred new public health approaches to the problem. Measuring the problem more carefully through disease surveillance is the first step in any public health approach. However, chronic diseases such as demenia present more difficult surveillance problems than acute diseases because the diagnoses are usually less clearcut and access to affected patients is less centralized. The February Dementia Registry Workshop of seven states represents one of the first attempts of states to coordinate their approaches to these problems. Recommendations of the workshop include a national consensus conference on operational definitions of dementias, autopsy validation of these and other diagnostic criteria, better Medical Subject Heading (MeSH) categories at the National Library of Medicine, and revised death certificates that better reflect data important to the diagnoses of Alzheimer's disease. This workshop helped begin to address important issues of standardizing and coordinating state efforts to deal with dementias that are national in scope and, as such, serves as a model for efforts to deal with other chronic diseases.