Only 45% of people with Alzheimer’s disease or their caregivers say they were told the diagnosis by their doctor, according to the 2015 Alzheimer’s Disease Facts and Figures report.

The Alzheimer’s Association says the disclosure rate mirrors that of cancer in the 1950s and 1960s, when that disease was considered taboo. The association says informing patients of an Alzheimer’s diagnosis should be standard practice so that they can understand their symptoms, take an active role in their care and offer informed consent on current and long-term plans.

“Healthcare professionals widely agree that people have the right to know and understand their diagnosis,” said William Klunk, M.D., Ph.D., chairman of the Alzheimer’s Association Medical and Scientific Advisory Council.

The report also found Alzheimer’s patients were more likely to report being told their diagnosis after the disease had become more advanced. Some providers say they worry diagnosis could cause emotional distress, but the 2015 report finds that “few patients become depressed or have other long-term emotional problems.”