Does a diagnosis of early-stage Alzheimer's disease change feelings of mental and social well-being?
Shana D. Stites, Psy.D.
The Trustees of the University of Pennsylvania
Philadelphia, PA - United States
A major focus in Alzheimer's disease research is to identify individuals who are at risk of developing the disease but who have not yet developed any symptoms. Tests for specific genes or molecules that are associated with Alzheimer's disease (biomarkers) are being developed to diagnose the disease before a person starts experiencing memory or learning problems. The goal is to diagnose and treat individuals as early as possible in order to prevent or delay the onset of Alzheimer's disease. However, it is unclear whether an early diagnosis of Alzheimer's disease is associated with public stigma, and how this affects an individual's mental and social well-being and perception of the future.
Shana D. Stites, Psy.D., and colleagues propose to examine the perceptions and effect of an early diagnosis of Alzheimer's disease in a series of three studies. In the first study, they will use an online survey of adults to understand the public's views on the concept of early-stage Alzheimer's disease and how biomarker testing and treatment may lead to stigma associated with the disease. The second study will analyze data collected from individuals who were enrolled in the Study of Knowledge and Reactions to ApoE Testing (SOKRATES2) trial and learned that they were positive for a biomarker for Alzheimer's disease (ApoE). Dr. Stites and colleagues will determine whether these individuals worry about being stigmatized or discriminated against by people in their lives, including friends, family members, and co-workers. The third study will analyze data from older adults who were enrolled in the Penn Alzheimer's Disease Center (ADC) National Alzheimer's Coordinating Center (NACC) study and were diagnosed with differing degrees of cognitive impairment, from mild cognitive impairment to various stages of Alzheimer's disease. The research team will examine how stigma about the diagnosis received in the study relates to differences in individuals' future time perspective, which is related to social motivation, quality of personal relationships, and health behaviors.
This study will inform changes in policies and practices for interventions designed to improve the quality of life of persons who have been identified as being at risk for Alzheimer's disease but who have not yet developed symptoms. The findings may also help in the design of Alzheimer's disease prevention studies, as well as clinical trials where a diagnosis or positive biomarker for Alzheimer's is needed.
This project was made possible by the Dale Schenk Alzheimer's Association Research Roundtable Award.
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