Alzheimer’s disease is the second-most feared disease, bested only by cancer, but a 12-country survey by the nonprofit Alzheimer’s Association indicates that there is more anxiety than understanding about the condition which eats away at memory and muscle function.

Among the findings: Fifty-nine percent of survey participants thought Alzheimer’s was just part of aging and 40% did not know it was fatal. The survey included participants from Australia, Brazil, Canada, China, Denmark, Germany, Japan, India, Mexico, Nigeria, Saudi Arabia and the United Kingdom. Thirty-seven percent thought genetics determined Alzheimer’s risk.

Neither of these perceptions is accurate.

Research continues to identify conditions or factors associated with Alzheimer’s but a clear target has yet to surface, and just when to start treating patients is unclear. In November, the National Institutes of Health identified 11 genes linked to Alzheimer’s. But even though having a sibling or parent with the disease indicates an increased risk, it is not a guarantee the disease will develop.

Further, although the disease is linked with seniority, the Alzheimer’s Association reports that the brain changes associated with the disease develop around 20 years before symptoms surface.

Even with this background, the disease’s impact is not fully quantified. Alzheimer’s used to be considered the sixth leading cause of death in the US, but a study released in March showed the tally was wrong, and it is probably the third-leading cause of death, behind heart disease and cancer.

Lead researcher Bryan James of Rush University Medical Center said in a statement at the time that Alzheimer’s is under-reported because death certificates typically address the immediate cause of death, such as pneumonia, as opposed to underlying causes, such as dementia. Autopsies confirmed Alzheimer’s among 90% of the patients surveyed, and found the death rate among patients was four times higher after diagnosis among patients 75 to 84, and three times higher among patients diagnosed at 85 or older. James’ team said this means Alzheimer’s is responsible for about five or six times as many deaths as Centers for Disease Control records indicate, because it is missing from death certificates which form the basis of CDC statistics.

Noting the global toll will be around 76 million Alzheimer’s patients by 2030, the Alzheimer’s Association coupled its survey results with a plea for government intervention. “We must hold our leaders responsible for investing in the research,” president and CEO of the Alzheimer’s Association Harry Johns said in a statement.

“Alzheimer’s disease knows no bounds. Anyone with a brain is at risk for Alzheimer’s disease, so everyone with a brain should join the fight against it” Johns said.