The Stigma of Alzheimer’s – When Understanding Leads to Hope | Alzheimer's Prevention Registry

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May 22, 2018

The Stigma of Alzheimer’s – When Understanding Leads to Hope

By Alzheimer's Prevention Bulletin

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A recent study published in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, confirmed what many may have assumed – when it comes to Alzheimer’s disease, there is a stigma. But the study also highlights areas where, through education and public policy, we might be able to lessen that stigma to create more understanding. 

The study presented more than 300 adults with a fictional story about a man with Alzheimer’s. The participants all read the same story but were then divided into three groups – being told the man’s condition would worsen, stay the same or improve. Participants were asked if the fictional “Mr. Andrews” would: 1) not remember recent events; 2) be discriminated against by employers; 3) be excluded from medical decision-making; 4) have difficulties obtaining insurance due to data in his medical record including genetic information and brain images. 

“I wanted to understand more precisely what the general public thinks about Alzheimer’s disease,” says Lead Researcher Shana Stites, PsyD, Perelman School of Medicine, University of Pennsylvania. “When we looked at the data, we only took into consideration those responses that indicated it was ‘extremely likely’ the fictitious patient would experience these things. We were looking for strongly held beliefs and certainty.”

Common stigmas related to Alzheimer’s disease
Stigma is defined as a “discrediting” characteristic applied to a person. 

“We answered the first question definitively – yes, there is a stigma,” says Dr. Stites. “We also found the stigma intensified based on the prognosis. There was less stigma if it seemed the patient would get better and more if it seemed his condition would worsen. The most striking result to me was that the top results pointed to the likelihood of discrimination.”

Stites remarked that there are currently several clinical trials, which depend on participants who are willing to undergo genetic and biomarker tests to determine eligibility. Often, the stigma surrounding Alzheimer’s is a barrier to trial participation because people are nervous about being discriminated against if anyone were to find out they were at risk or have early signs of the disease. By understanding the biggest concerns, it’s hoped that programs and policies can be developed to reduce the stigmas and offer more protections.

Research provides opportunities to break down stigmas
Clearly, there is much work to be done with regard to education and policy making. But knowledge is power and the more we know about the barriers to research study participation, the more we can address the issues. The more advances that are made in Alzheimer’s research, the more opportunities there are to reduce the stigma. 

“There are opportunities to reduce the stigma – that’s the hope,” says Dr. Stites. “In fact, although stigma may deter some from participating in research studies, it’s also true that because of the scientific advances resulting from these studies, there are new opportunities to advance public policy and the public’s knowledge as ways to reduce stigma. This is an exciting time in Alzheimer’s research. We have opportunities to break down the stereotypes, put a face to this disease and show the world how you can live better, even with this diagnosis.”

Find a Study opportunity for you or a loved one by going to www.endalznow.org/find-a-study

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