Published on: April 1, 2018
by Hazel Shahgholi Smith for MedPage Today:
Widespread stigma related to Alzheimer’s disease (AD) may act as a barrier against individuals’ seeking early risk-assessment, treatment, or participating in research relating to the condition, a survey study confirmed.
The researchers asked 317 randomly selected U.S. adults in the general population to review a fictional case vignette of a man with mild AD dementia and complete a survey. In adjusted analyses, 55.3% of respondents said they would expect the patient with mild-stage AD to be discriminated against by employers and excluded from medical decision-making, reported Shana D. Stites, PsyD, MA, MS, of the University of Pennsylvania, and colleagues.
Just under half of respondents expected the patient’s health insurance to be limited due to either data in his medical record (46.6%), brain imaging results (45.6%) or genetic testing (44.7%), according to the study in Alzheimer’s & Dementia.
“We found that concerns about discrimination and overly harsh judgments about the severity of symptoms were most prevalent,” Stites said in a statement from the Alzheimer’s Association.
When informed the condition of the person would worsen over time, negative perceptions jumped substantially, with 78.4% of respondents anticipating on-the-job discrimination and nearly 75% assuming the person would be excluded from medical decision-making. Furthermore, when taking into account this worsening prognosis, most respondents expected the patient’s health insurance to be limited due to medical record data (65.7%) or brain imaging results (62.7%).
The study is a secondary analysis of data obtained from a larger study of AD perceptions.
“Understanding which attributes are most often associated with AD dementia by the public may help identify the most overt and wide-reaching concerns related to the disease, which may help inform interventional programs and policy changes to reduce AD stigma,” the authors wrote.
A national target set during the Obama administration seeks to develop effective therapies for AD by 2025 — an already difficult goal that could be compromised if pervasive fears of negative repercussions of entering research studies, as reinforced by this data.
“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 Maria C. Carrillo, PhD, of the Alzheimer’s Association, in the statement.
Mean age of survey participants was 49, and 80% self-identified as white. The fictional vignette they reviewed depicted a man suffering from impairments typical of mild-stage AD dementia, and respondents were split into three subgroups where they were told the condition of the man would either worsen, improve or remain unchanged.
The group informed that the man’s condition would improve provided a moment of encouragement, as 24% to 41% fewer respondents expected the same level of exclusion and discrimination compared with those who were told man’s condition would worsen. “Thus, advances in therapies that improve the prognosis of AD could help reduce stigma,” the authors wrote.
In relation to the substantial fears over insurance coverage limitations that may deter individuals from seeking out testing or participating in AD trials, the authors drew attention to the Genetic Information Nondiscrimination Act (GINA) of 2008.
While GINA offers protections against gene-based healthcare insurance discrimination, “it does not extend to all types of testing, such as brain-imaging results,” commonly used in the diagnosis of AD dementia, they wrote. “Moreover, it does not offer protections for long-term care insurance, which is often a key factor for persons undergoing AD gene and biomarker testing.”
The researchers’ hypotheses regarding age and ethnicity were affirmed, as sub-analyses found that African-American respondents were less likely than white respondents to expect a person with AD dementia to face employer discrimination, have their health insurance coverage limited, or be excluded from medical decision-making. Older individuals reported expectations of increased persecution across these categories, as well.
Study limitations included its small size, the lack of a social role attributed to the man in the vignette, and that the analyses may not have had sufficient statistical power to detect statistically significant differences based on the respondents’ gender.
Future research implications include understanding differences in stigma across different racial/ethnic, and socioeconomic groups and how diagnosis, testing and treatment can be reoriented to reduce stigma. The authors call for increased public education on employer and insurance discrimination as “related to gene and biomarker risk data.”
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