Survey Finds Reducing Stigma Attributed To Alzheimer’s Disease Vital To Prevention Research
"We found that concerns about discrimination and overly harsh judgments about the severity of symptoms were most prevalent," said
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
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
Co-authors on the study are
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