Survey Finds Reducing Stigma Attributed To Alzheimer's Disease Vital To Prevention Research

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 random sample of 317 adults was asked to react to a fictional description of a person with mild stage Alzheimer's disease dementia. The study asked respondents to read a vignette and then complete the survey. Three different assessments were presented for the fictional person's condition. Respondents were told the person's condition would worsen, improve or remain unchanged.

Over half of the respondents (55 percent) expected the person with mild cognitive impairment or dementia due to Alzheimer's to be discriminated against by employers and to be excluded from medical decision-making. Almost half expected the person's health insurance would be limited due to data in the medical record (47 percent), a brain imaging result (46 percent) or genetic test result (45 percent). Those numbers increased when the survey participants were informed that the condition of the person with Alzheimer's would worsen over time.

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.

In addition, the study authors found that when told the fictional person's prognosis would improve over time, 24 percent to 41 percent fewer respondents expected that the person would encounter discrimination or exclusion than when told the person's prognosis would worsen. According to the researchers, this suggests that advances in therapies that improve the prognosis of Alzheimer's could help reduce stigma.

"The unfortunate stigma associated with Alzheimer's 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 Alzheimer's disease 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."

Dr. Carrillo stressed the importance of early diagnosis for people with Alzheimer's disease and related dementias and their families to provide more time to plan for the future by participating in decisions about treatments, living options, financial and legal matters, as well as building a care team to making it easier to manage the disease.

In the article's conclusion, the authors state that public education and policies are needed to shift Alzheimer's disease stigma by addressing these concerns about potential discrimination based on genetic and biomarker test results that may be keeping people from learning their own results and participating in prevention clinical trials.

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.

Co-authors on the study are Jonathan D. Rubright, Ph.D., National Board of Medical Examiners, Philadelphia, and Jason Karlawish, M.D., Penn Memory Center, University of Pennsylvania.

About the Alzheimer's Association® 
The Alzheimer's Association is the leading voluntary health organization in Alzheimer's care, support and research. Our mission is to eliminate Alzheimer's disease through the advancement of research, to provide and enhance care and support for all affected, and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer's. For more information, visit the Alzheimer's Association at alz.org or call the 24/7 helpline at 800-272-3900.

About Alzheimer's & Dementia: The Journal of the Alzheimer's Association
The mission of Alzheimer's & Dementia: The Journal of the Alzheimer's Association is to bridge the knowledge gaps across a wide range of bench-to-bedside investigations. The journal creates a forum for rapid communication of new findings, ideas and perspectives; increases knowledge in diverse disciplines to promote early detection/diagnosis and/or interventions; and provides the scientific impetus for new initiatives or public policies concerning research on prevention and new models of health services. 

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