- Public stigma linked to Alzheimer's disease prevents people from being diagnosed early
- Understanding the disease can help develop new programs and policies
- Advancement in therapies to improve the prognosis of Alzheimer's can help reduce stigma
Public stigma associated with Alzheimer's can prevent people with the disease from getting the required diagnosis that could improve their quality of life, reveals a new study.
The results of this study were according to a national survey about what beliefs, attitudes, and expectations are linked to Alzheimer's Disease
‘Understanding Alzheimer's disease can help develop novel programs and policies to reduce the stigma about the disease.’
The results of the survey were published in Alzheimer's & Dementia: The Journal of the Alzheimer's Association.
"We found that concerns about discrimination and overly harsh judgments about the severity of symptoms were most prevalent,"
said Shana Stites, Psy.D., from the Perelman School of Medicine, University of Pennsylvania.
Understanding the bigger concerns about the disease can help develop novel programs and policies to reduce the stigma about Alzheimer's disease, explained Shana Stites.
Stigma of Alzheimer's Disease
About 317 adults were selected randomly for this study. The respondents were asked to react to a fictional description of an individual with mild-stage Alzheimer's disease or dementia.
The research team has asked the respondents to read a vignette and then to finish the survey.
The team presented three different assessments of the fictional person's condition and were told that the condition might worsen or improve or can even remain unchanged.
More than half, about 55 percent respondents expected the person with mild cognitive impairment or dementia due to Alzheimer's to be segregated by their employers and also to exclude them from medical decision-making.
Almost half of the respondents expected the person's health insurance would be limited, as their data in the medical record was 47 percent, a brain imaging result was 46 percent, and the genetic test result was 45 percent.
The numbers increased when the respondents were informed that the condition would worsen over time.
The results suggest that respondents continued to have concerns about documentation in the medical record or test results, though there were some protections in place against gene-based health care insurance discrimination, via., the Genetic Information Nondiscrimination Act of 2008 (GINA). However, the concerns of the public also include issues not addressed by that legislation like brain imaging results.
Also, when the respondents were told that the fictional person's prognosis of the disease would improve over time, there was about 24 percent to 41 percent fewer respondents who expected that the person should encounter discrimination or exclusion.
Reduce Stigma in People with Alzheimer's disease
The research team suggests that advancement in therapies to improve the prognosis of Alzheimer's can help reduce stigma.
"The unfortunate stigma associated with Alzheimer's may prevent people from getting the diagnosis they need or the opportunity for early intervention that could improve their quality of life," said Maria C. Carrillo, Ph.D., Chief Science Officer, Alzheimer's Association.
By reducing the stigma, persons with mid-stage Alzheimer's disease can be encouraged to enroll in prevention trials that can lead to the development of effective treatments.
These findings can be associated with the national goal of developing new and effective therapy by 2025.
Dr. Carrillo emphasized the importance of early diagnosis of Alzheimer's disease and dementia. He also said if their families could provide more time to plan for the future by allowing them to participate in decisions about treatments, living options, financial and legal matters, building a care team makes it easier to manage the disease.
The research team concludes that public education and policies are needed to remove Alzheimer's disease stigma and these concerns about potential discrimination based on genetic and biomarker test results needs to be addressed, which could be keeping people from learning their results and participating in prevention clinical trials.
What is Alzheimer's disease?
Alzheimer's disease was first identified by German psychiatrist Alois Alzheimer in 1906. It is a neurodegenerative disease, wherein the proteins build-up, and form plaques and tangles.
The formation of plaques leads to loss of connections between nerve cells, resulting in the death of nerve cells and loss of brain tissue.
Studies have shown that in people with Alzheimer's, there is a shortage of chemicals that help to transmit signals around the brain. As Alzheimer's is a neurodegenerative disease, it affects more parts of the brain, and the symptoms become more severe with time.
- Shana D. Stites, Jonathan D. Rubright, and Jason Karlawish.
What features of stigma do the public most commonly attribute to Alzheimer's disease dementia? Results of a survey of the U.S. general public Alzheimer's & Dementia: The Journal of the Alzheimer's AssociationDOI: https://doi.org/10.1016/j.jalz.2018.01.006