A study published in Alzheimer's & Dementia identified concerns about discrimination, severity of symptoms, and loss of decision-making power that prevent people from seeking information and care for dementia and Alzheimer’s disease (AD).
Researchers at the Perelman School of Medicine, University of Pennsylvania, surveyed 317 adults, asking them to read a fictional description of a person with mild stage AD dementia and then complete a survey about the vignette. Respondents were also told 1 of 3 possible outcomes that included the person described in the vignette having a disease course that worsened, improved, or remained unchanged.
Discrimination by employers and exclusion from medical decision making were expected for the described patient by 55% of respondents, and many respondents also believed that the patient’s health insurance would be limited because of information in their medical record (47%), brain imaging results (46%), or genetic test results (45%); the percent of respondents with those beliefs was lower in the group who were told the patient’s condition would improve, suggesting that advances in therapy might help reduce the stigma of AD.
"We found that concerns about discrimination and overly harsh judgments about the severity of symptoms were most prevalent," said Shana Stites, Psy.D., first author of the study. "By understanding what the biggest concerns are about the disease, we can help develop programs and policies to reduce the stigma about AD." The authors also suggest that public education and policies that specifically address fear of discrimination based on genetic and biomarker tests.
"The unfortunate stigma associated with AD may prevent people from getting the diagnosis they need or the opportunity for early intervention that could improve their quality of life," said Maria C. Carrillo, Ph.D., Chief Science Officer, Alzheimer's Association. "We need to reduce the stigma to encourage persons with mild or even no symptoms of AD to enroll in prevention trials to find effective treatments. These survey findings could also have implications on the national goal of developing an effective therapy by 2025."Next Story