Majority of adults expect Alzheimer's patients to be excluded from medical decisions: 4 study insights

Stigma connected with Alzheimer's disease may create barriers for individuals seeking information about their risk of the disease and discourage them from participating in clinical studies that could develop potential therapies, according to a study published in Alzheimer's & Dementia.

To determine the beliefs, attitudes and expectations most often associated with Alzheimer's disease, the study authors gathered data from a random sample of 317 adults and asked them to react to a fictional description of a patient with mild stage Alzheimer's disease dementia.

Respondents read a vignette and then completed the survey. Three different assessments were presented for the fictional patient's condition. Respondents were then told whether the patient's condition would worsen, improve or remain unchanged.

Here are four insights from the study.

1. The majority of respondents (55 percent) expected the patient with mild cognitive impairment or dementia due to Alzheimer's disease to be discriminated against by employers and to be excluded from medical decision-making.

2. Nearly half of respondents expected the patient's health insurance would be limited due to data in the medical record (47 percent), a brain imaging result (46 percent) or a genetic test result (45 percent). Those numbers increased when the survey participants were informed the fictional patient's condition would worsen over time.

3. Additionally, when told the fictional patient's prognosis would improve over time, 24 percent to 41 percent fewer respondents expected the patient to experience discrimination or exclusion than when they were told the patient's prognosis would worsen. This finding suggests advances in therapies that improve an Alzheimer's disease patient's prognosis could help reduce stigma, according to the study authors.

4. "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 Carrillo, PhD, chief science officer of the 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."

More articles on patient engagement: 
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