A survey has found that reducing stigma attributed to Alzheimer’s disease is vital to prevention research.
The survey focused on what beliefs, attitudes and expectations are most often associated with the disease.
“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.
“By understanding what the biggest concerns are about the disease, we can help develop programs and policies to reduce the stigma about Alzheimer’s disease.”
The random sample of 317 adults was asked to react to a fictional description of a person with mild stage Alzheimer’s disease dementia. The study asked respondents to read a vignette and then complete the survey. Three different assessments were presented for the fictional person’s condition. Respondents were told the person’s condition would worsen, improve or remain unchanged.
Over half of the respondents (55 percent) expected the person with mild cognitive impairment or dementia due to Alzheimer’s to be discriminated against by employers and to be excluded from medical decision-making.
Almost half expected the person’s health insurance would be limited due to data in the medical record (47 percent), a brain imaging result (46 percent) or genetic test result (45 percent). Those numbers increased when the survey participants were informed that the condition of the person with Alzheimer’s would worsen over time.
“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.
“We need to reduce the stigma to encourage persons with mild or even no symptoms of Alzheimer’s disease to enroll in prevention trials to find effective treatments. These survey findings could also have implications on the national goal of developing an effective therapy by 2025.”
The survey results are published in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association.