The relative contributions of biomarkers, disease modifying treatment, and dementia severity to Alzheimer's stigma: A vignette-based experiment

Abstract

Objective: The symptoms and prognosis of Alzheimer's disease (AD) dementia contribute to the public's negative reactions toward individuals with AD dementia and their families. But what if, using AD biomarker tests, diagnosis was made before the onset of dementia, and a disease-modifying treatment was available? This study tests the hypotheses that a "preclinical" diagnosis of AD and treatment that improves prognosis will mitigate stigmatizing reactions.

Methods: A sample of U.S. adults were randomized to receive one vignette created by a 3 × 2 × 2 vignette-based experiment that described a person with varied clinical symptom severity (Clinical Dementia Rating stages 0 (no dementia), 1 (mild), or 2 (moderate)), AD biomarker test results (positive vs negative), and disease-modifying treatment (available vs not available). Between-group comparisons were conducted of scores on the Modified Family Stigma in Alzheimer's Disease Scale (FS-ADS).

Results: The sample of 1,817 adults had a mean age two years younger than that of U.S. adults but was otherwise similar to the general adult population. The response rate was 63% and the completion rate was 96%. In comparisons of randomized groups, mild and moderate symptoms of dementia evoked stronger reactions on all FS-ADS domains compared to no dementia (all p < 0.001). A positive biomarker test result evoked stronger reactions on all but one FS-ADS domain (negative aesthetic attributions) compared to a negative biomarker result (all p < 0.001). Disease-modifying treatment had no measurable influence on stigma (all p > 0.05).

Conclusions: The stigmas of dementia spill over into preclinical AD, and availability of treatment does not alter that stigma. Translation of the preclinical AD construct from research into practice will require interventions that mitigate AD stigma to preserve the dignity and identity of individuals living with AD.

Keywords: Alzheimer's biomarkers; Preclinical Alzheimer's; Stigma; Treatment.

Figure 1.

Consort Diagram: Study flow through analysis Note. The comprehension item confirmed respondents accurately understood the educational information on use of Alzheimer’s disease biomarkers. Respondents were given two opportunities to select the correct choice. Those who failed on the second attempt were excluded. *Demographic quota – Population-based allocations were used for race, ethnicity, gender, education achievement.

Figure 2.

Box plot of domain distributions on Family Stigma in Alzheimer’s Disease Scale (FS-ADS) by biomarker test result. Neg. = A negative Alzheimer’s disease biomarker test. Pos. = A positive Alzheimer’s disease biomarker test. Legend: point = outlier, defined as a value more than 1.5 times the lower or upper quartile; upper and lower whiskers = maximum and minimum values, respectively, excluding outliers; top and bottom of rectangle = upper and lower quartiles, respectively; and white horizontal line = median value.