A study has uncovered what causes people to experience stigmatizing reactions to persons with Alzheimer’s disease dementia.
Researchers –including Rebecca Johnson, M.A. Princeton University Department of Sociology, Jason Karlawish, MD, associate director of the Penn Memory Center, Pamela Sankar, PhD of the Department of Medical Ethics and Health Policy, and Kristin Harkins, research coordinator at the Penn Memory Center — presented these results at the American Public Health Association annual meeting in November 2014.
“This project on Alzheimer’s stigma was sparked by an observation,” says Johnson. “Although researchers, clinicians and the public often talk about how those with Alzheimer’s face stigma, there was a lack of clarity about what features of Alzheimer’s prompt stigmatizing reactions in others.”
The online experiment with 800 adults from the U.S. general population had participants read a story about a patient with symptoms that described mild stage dementia. Participants were randomized to one of nine unique stories that differed in two key features: the disease label (“Alzheimer’s” versus “traumatic brain injury” versus no label), and the prognosis (“symptoms will get better” versus “stay the same” versus “worsen”). Next, the participants answered questions about their attitudes towards the person in the story, such as what emotions they felt and whether they thought the patient’s friends would start to distance themselves from the patient.
All participants read a story about a man with mild stage dementia, but some read that his disabilities were caused by Alzheimer’s while others read that that they were caused by brain injury or they did not have a cause. And the prognosis varied as well. These variations in the label and the prognosis allowed the researchers to test whether the disease label or the prognosis drive stigmatizing reactions.
Learning that the dementia symptoms were caused by Alzheimer’s didn’t prompt more stigmatizing responses than from the other possible causes. In short, the disease label did not influence stigma. Instead, stigmatizing reactions were more likely from people whose story described that the patient’s symptoms would get worse.
The study suggests that one of the best ways to minimize stigmatizing reactions for Alzheimer’s patients is to emphasize the range of clinical outcomes and prognoses people may have. The researchers concluded that it is also important that public messaging around Alzheimer’s should reflect the broad range of levels of the disease rather than just the most severe cases. Most importantly, the results suggest the need to understand the potential for stigma in persons in the “pre-clinical” stage of the disease. This stage — which is still under study and not yet used in clinical practice — describes an asymptomatic person who has Alzheimer’s biomarker pathology. It is a stage defined by prognosis and if this study of stigma is correct, then people with the label may experience stigma.
To listen to a recording of the presentation at the APHA meeting, click here.