Progress in Chronic Disease Prevention Alzheimer Disease -- California, 1985-1987

In 1984, the California legislature established the Alzheimer Disease Program (ADP) in the California Department of Health Services (CDHS). Purposes of the ADP are to improve services for the diagnosis and treatment of dementias, support medical education about dementias, and promote research on Alzheimer disease (AD) and related disorders. In 1985, the ADP created six AD diagnostic and treatment centers in affiliation with medical schools and established additional centers in 1989.

Each treatment center collects uniform data on all suspected dementia* patients referred to the center and reports these data to a central registry at the Institute for Aging at the University of California, San Francisco. Sources of data are the initial diagnostic evaluation, periodic follow-up evaluations, and postmortem reports. Data entered in the registry include information from the patients' medical histories, clinical findings, and potential risk factors; medical and social support services used; types of care received; and social and demographic characteristics. Information has been collected on greater than 1700 persons and is available for analysis on 1011 patients referred to the six original treatment centers from June 10, 1985, to December 31, 1987 (Table 1). These centers are located in five counties (Alameda, Los Angeles, Sacramento, San Diego, and San Francisco), which contain 50.5% of the California population greater than 50 years of age.

Of the 439 patients with a diagnosis of AD only, 298 (67.9%) were women. Three hundred thirty-nine (77.2%) were white; 40 (9.1%), black; 33 (7.5%), Hispanic; nine (2.1%), Asian/Pacific Islander; three (0.7%), other races; and 15 (3.4%), unknown race. The ages of patients at onset of symptoms ranged from 45 to 92 years (mean: 70.3 years) (Table 2).

The 439 AD patients were referred to treatment centers from several sources, including family (289 (65.8%)), physicians (106 (24.1%)), social services and support groups (83 (18.9%)), special-care facilities (59 (13.4%)), friends (43 (9.8%)), and self (22 (5.0%)). The most common reasons for referral included evaluation of a memory problem (387 (88.2%)) or personality change (143 (32.6%)), desire for a second opinion about a previous diagnosis of AD or other dementia (201 (45.8%)), concern about patient agitation (160 (36.4%)), and difficulty with patient management (100 (22.8%)). Reported by: J Howard, MPH, Alzheimer Disease Program, N Kohatsu, MD, Epidemiology Section, K Acree, MD, Chronic Disease Prevention and Health Promotion Br, Div of Preventive Medicine, California Dept of Health Svcs. Div of Chronic Disease Control and Community Intervention, Center for Chronic Disease Prevention and Health Promotion; Div of Field Svcs, Epidemiology Program Office, CDC.

Editorial Note

Editorial Note: Probable AD can be clinically diagnosed if there is typical insidious onset of dementia with progression and no other systemic or brain diseases to account for the progressive cognitive dysfunction. Diagnosis of definite AD requires histopathologic confirmation; characteristics are degeneration of specific nerve cells and presence of neuritic plaques and neurofibrillary tangles.

As the U.S. population ages, the public health impact of dementias is increasing in importance (1). An estimated 1.6 million persons suffer from severe dementias, and by the year 2000, at least 2.3 million persons are expected to be affected. An estimated 1 million to 5 million persons suffer mild to moderate dementias. Severe dementias usually require long-term care; in 1985, annual costs for care and related expenses were estimated at $24-$48 billion.

In response to the social, economic, and medical problems related to severe dementias, California and other states have developed statewide approaches that address the needs for training, research, improved services for diagnosis and treatment, public education, and long-term care (2). Some states have also established surveillance of dementias (3) to help plan service needs, examine temporal and geographic trends in the occurrence of these problems, and guide research efforts.

Efforts to maintain surveillance are constrained by at least two problems (4). First, because there are no known biological markers for AD, the most frequent dementia, a practical case definition has not been established. Diagnostic criteria have been developed by consensus; however, these criteria have not been defined in a manner usable by clinicians. Consequently, no data exist on the validity of AD diagnoses. Second, case ascertainment is difficult because diagnostic evaluation is typically done outside referral centers and other hospitals, so access to patient records is not centralized.

Characteristics of patients reported by the ADP may not be representative of all AD patients in California because the registry was not designed as a surveillance system for dementia. Rather, the ADP is designed to provide state-of-the-art diagnoses for those patients referred and should provide useful data for research on the course of these illnesses. Progress in dealing with dementias will depend on the development of more accurate diagnostic criteria (e.g., identifying biological markers for AD); application of appropriate treatment; education of caregivers and the public regarding the care of patients with dementia; and more adequate information on the social aspects of persons with dementia.

References

1. Office of Technology Assessment. Losing a million minds: confronting the tragedy of Alz heimer's disease and other dementias. Washington, DC: US Congress, Office of Technology Assessment, 1987; document no. OTA-BA-323.

2. Weiler PG. The public health impact of Alzheimer's disease. Am J Public Health 1987;77: 1157-8.

3. Helmick CG, Henry ME, Aubert RE, et al. State surveillance of dementing illnesses; perspective and workshop recommendations. Alzheimer's Care and Related Disorders and Research 1988;5:40-4.

4. Hughes JP, van Belle G, Kukull W, Larson EB, Teri L. On the uses of registries for Alzheimer's disease. Seattle, Washington: School of Public Health and Community Medicine, 1988. (Department of Biostatistics technical report no. 87). *Global cognitive impairment and a decline in intellectual function in a person with clear consciousness.

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