Adapted from Alzheimer’s Association press release.
Many individuals worry that an Alzheimer’s disease diagnosis will lead to discrimination in the workplace and exclusion in the medical setting, according to Penn Memory Center research. These perceptions may prevent someone from going to the doctor to get the care they need, or from participating in clinical trials needed to advance Alzheimer’s disease research and care.
At PMC, clinical psychologist and researcher Dr. Shana Stites led a team to look at responses from a general public survey featuring descriptions about a man named “Mr. Andrews.” In one version of the survey that went to 317 randomly selected respondents, Mr. Andrews went to the doctor’s office complaining of memory problems and was diagnosed with Alzheimer’s disease. (Other versions had Mr. Andrews diagnosed traumatic brain injury, or not diagnosed with anything at all.)
Respondents were then asked questions about Mr. Andrews. More than half of respondents expected him to face workplace discrimination (55.3%) and to be excluded from medical decision-making (55.3%). Nearly half also thought his health insurance would be limited due to information about his diagnosis being placed in his medical record (46.6%) or based on the result of a test, such as a brain imaging scan (45.6%) or genetic test (44.7%).
What is also interesting is when respondents were told these symptoms would progressively worsen, more respondents believed Mr. Andrews would face discrimination and exclusion. But when Mr. Andrews was described with symptoms that would improve with treatment, fewer respondents said he would face those difficulties.
“We found worries about discrimination accounted for 4 of the 5 most common concerns reported by survey respondents,” Dr. Stites said. “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.”
These results may highlight that existing policies, like the Genetic Information Nondiscrimination Act of 2008 (GINA) that protects against discrimination from genetic information, may not be enough to ease the worries of the general public. These existing policies also do not apply to discrimination from biomarker results, like amyloid PET scans being studied for diagnosis of Alzheimer’s disease.
“We need to reduce the stigma to encourage persons with mild or even no symptoms of Alzheimer’s disease to enroll in prevention trials to find effective treatments,” said Alzheimer’s Association Chief Science Officer Dr. Maria Carrillo in a statement. “These survey findings could also have implications on the national goal of developing an effective therapy by 2025.”
At the end of the study, Dr. Stites and her team called for further research on this topic. The researchers, which included Dr. Jonathan Rubright from the Philadelphia National Board of Medical Examiners and PMC Co-Director Dr. Jason Karlawish, wrote, “It is unlikely that advances in therapies will serendipitously reduce AD stigma. Studies are needed to understand how advances in diagnosis, testing, and treatment may shift AD stigma and to help position these advances as opportunities to reduce AD stigma.”
This study was published in Alzheimer’s and Dementia: The Journal of the Alzheimer’s Association on March 27, 2018. It comes on the heels of two related studies from Penn Memory Center researchers that reported that expected deterioration of Alzheimer’s disease symptoms is what contributes to negative feelings about the disease, and older age is strongly associated to negative beliefs about social interaction and support for those with the disease.
— Staff Writer Joyce Lee contributed to this article.