Singapore - Stigma associated with Alzheimer's disease may be an obstacle for individuals to seek information about their risk of developing Alzheimer's disease and to participate in clinical studies that discover potential therapies. That's according to the results of a national survey about what beliefs, attitudes and expectations are most often associated with Alzheimer's disease. The survey results are published in Alzheimer's & Dementia: The Journal of the Alzheimer's Association.
"We found that concerns about discrimination and overly harsh judgments about the severity of symptoms were most prevalent," said Shana Stites, Psy.D., from the Perelman School of Medicine, University of Pennsylvania. "By understanding what the biggest concerns are about the disease, we can help develop programs and policies to reduce the stigma about Alzheimer's disease."
The study findings suggest respondents continue to have concerns about documentation in the medical record or test results, despite the fact that there are some protections in place against gene-based health care insurance discrimination through the Genetic Information Nondiscrimination Act of 2008 (GINA). However, those concerns of the public also include issues not addressed by that legislation, including brain imaging results.
The study was supported by grants from the Alzheimer's Association, the Penn Neurodegenerative Disease Ethics and Policy Program and the Healthy Brain Research Center; and supported in part by a grant from the National Institute on Aging, and cooperative agreements from the Centers for Disease Control and Prevention, Prevention Research Centers Program.
