Study: Social media users reinforce stigmas about Alzheimer’s, dementia

CORVALLIS, Ore. — Millions of Twitter and Facebook comments are lobbed onto the internet each day, but often times these disconnected users don’t realize their toss-away tweet or status may actually be causing emotional pain to people which they’d be less likely to do in a face-to-face exchange.

Using software to analyze social media comments pertaining to Alzheimer’s disease and other forms of dementia, researchers from Oregon State University found that a majority (51 percent) of over 33,000 tweets used negative stereotypes to refer to those dealing with the condition. The study authors explained that the software could be applied to a wide range of analysis, particularly in measuring the effect online comments have on people versus real-life human interaction.

Those with dementia may feel stereotyped by social media comments.
Those with dementia may feel stereotyped or stigmatized by social media comments.

“It was shocking to me how many people stigmatized Alzheimer’s disease and reinforced stereotypes that can further alienate people with this condition,” says Karen Hooker of OSU’s College of Public Health and Human Sciences in a university news release. “This can create what we call ‘excess disability,’ when people with a stigmatized condition perform worse just because of the negative expectations that damaging stereotypes bring.”

Thoughtless and demeaning comments are already a problem on social media networks, and the researchers say that the targeting of people with disease — Alzheimer’s or any other — could make this already negative issue much worse.

“As a society it’s like we’re learning a new skill of text communication, and we don’t fully understand or reflect on its power to affect so many people in ways that we may not have intended,” says Nels Oscar, of OSU’s College of Engineering. “Social media is instant, in some cases can reach millions of people at once, and can even instigate behaviors. We often don’t even know who might eventually read it and how it will affect them.”

The study authors caution that with so much information being put into social media cyberspace, people often lose track of what a comment without context can mean to others.

“A point many people don’t understand when using social media is that their intent is often irrelevant,” says Oscar. “All people eventually see is the comment, without any other context, and have to deal with the pain it can cause.”

According to past research, individuals with some form of dementia is projected to triple in the coming decades, from 43 million today to 131 million by 2050. The Centers for Disease Control and Prevention states it is the sixth leading cause of death among all adults and the fifth leading cause for those aged 65 or older.

The researchers note that negative attitudes about dementia and those affected by it can result in shame, guilt, hopelessness, and social exclusion. A delay in diagnosis, refusal to cope or other denial issues can be the direct effect of even online shaming.

“We should also consider ways to combat stigma and negative stereotypes by tweeting about the positive experiences of persons with dementia and people in their social networks,” Hooker added.

This research was one part of a six-year, $2.3 million project funded by the National Science Foundation and was published in the Journals of Gerontology: Psychological Sciences.

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