Todd Gerber

Predictors of health and human services use by persons with dementia and their family caregivers

The aim of this study was to identify predictors of the use of health and human services by community residing persons with dementia and their family caregivers. Telephone interviews were conducted with a sample of 608 primary caregivers of community residing persons with dementia who were randomly selected from a state-wide dementia registry. The Anderson Behavioral Model of Health Care Use was used as the analytic framework. Hierarchical ordinary least squares regression models were developed to analyze predictors of health and human services use. Predisposing, enabling, and need variables explained 40.9% of the variance in service use, 29.8% of the variance in health service use, and 38.1% of the variance in the use of human services. Enabling variables explained more variance in the use of health and human services than did need or predisposing variables. In contrast to the health services utilization literature that points to the importance of need variables, the results of this study lend support to findings in the caregiving literature that indicate that enabling variables are at least as important as need variables in predicting the use of community services by family caregivers of persons with dementia.

Care of Diabetic Patients by Optometrists in New York State

Objective This study was undertaken to learn about the involvement of optometrists in the eye care of diabetic patients in New York and to collect baseline data for planning intervention programs in diabetic eye disease. Research Design and Methods This study was conducted by a mail survey being sent to all optometrists in New York whom we could identify through state sources (n = 2270). Three follow-up mailings were conducted. Results Eighty-six percent who received our mailing responded, 87%of whom reported that they see diabetic patients. Analysis was confined to this 87%. Routine retinal examinations were provided by 68% of the respondents who see diabetic patients, 62% of whom dilate the pupils. Sixty-eight percent who see diabetic patients diagnose retinopathy solely by their own examination, and 60% of these dilate. Follow-up of retinopathy was provided by 15% of optometrists who see diabetic patients, 90% of whom dilate the pupils of their diabetic patients. Twenty-five percent of respondents who see diabetic patients refer them to an ophthalmologist for diagnosis of retinopathy, and 67% refer all retinopathy patients to an ophthalmologist for follow-up. Although 91% of respondents recommended eye examinations at least annually for diabetic patients, only 68% specifically recommended annual examinations through dilated pupils. Those who dilate were significantly more likely to recommend annual dilated examinations than those who do not dilate, regardless of practice setting. Conclusions These findings indicate that optometrists as a group see many diabetic patients. Intervention strategies should include increased emphasis on the use of dilation when examining diabetic patients and annual dilated retinal examinations.

Validating the accuracy and quality of data in the New York State Alzheimer's Disease and Other Dementias Registry

Validity can be measured by the amount of bias in registry data which consists of anything that changes the ability to correctly measure the risk of disease in the population. Three issues are explored which may effect the validity of the data: selection of patients; information or measurement errors; and confounding. New York State has practiced various measures to control for and prevent bias in the data collected for the Alzheimers Disease and Other Dementias Registry. In addition to preventing bias through registry design and quality control, possible sources of confounding are identified which may be controlled during statistical analysis. Besides preventing and controlling bias, it is necessary to continuously measure and evaluate the validity of the data which has already been collected. An important outcome of this examination is the conclusion that an evaluation of diagnostic practices and validity of diagnoses reported to the registry must not be conducted.

State surveillance of dementing illnesses: perspective and workshop recommendations

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 Alzheimers 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.

Human subjects protection in a study of caregivers of community-residing persons with dementia.

This article describes the processes and methods used to protect human subjects during a joint research project undertaken by a state health department and a university-based research team. The use of a statewide registry to obtain a sample of primary caregivers of persons with dementia provided a unique opportunity for the research team to interview a large and representative sample of caregivers. At the same time, it raised complex issues regarding the privacy of the primary caregivers and the confidentiality of the patient data that were drawn from the state-operated mandatory dementia registry. Guidelines for enabling access while ensuring the privacy and confidentiality of the study participants are presented.

The New York State Department of Health's Alzheimer's disease and other dementias registry first year experience

The New York State Departm ent of Health established the Alzheimers Disease and Other Dementias Registry in August 1986. A legal requirement was enacted through Public Health Law that stipulated physicians and facilities must begin reporting the diagnosis or confirmation of Alzheimerls disease beginning January 1, 1987. By September 1987, over4, 000 reports had been submitted to the registry. Analysis of the reporting experience up to September 1987 provided the basis for a revision of the case report form and procedures for reporting, that are intended to improve the validity of the data. The process of revising the confidential case report form involved both consideration of methodologic issues and reporter concerns.

Issues of prvacy and confidentiality in dementia regfimes

Ruth K. Abramson, PhD, Department of neuropsyciatry and Behavioral Sciences, Unitersty of South Carolina School of Medicine; Columbia, South Carolina Todd Gerber, Alzheimers Disease Registry, Gerontology Program, New York State Department ofHealth, Albany, New York C. Diane Woolard, MPH, Office of Epidemiology, Virginia Department of Health, Richmond, Virginia and definition of confidentiality; (2) impact on mechanisms of data acquisition; (3) impact on the kinds of data acquired and (4) mechanisms for interstate access to registry data with confidentiality protection for public health planning and research.