A new report by the Alzheimer’s Association asserts that fewer than half of Alzheimer’s patients and their caregivers ever learn of their diagnosis from a physician, and those who do typically don’t learn of it until they are in the advanced stages of the disease.

The repercussions of those findings are troubling, says Beth Kallmyer, MSW, vice president of Constituent Services for the Alzheimer’s Association. The lack of knowledge likely hinders the impaired patients from actively participating in vital research or critical decisions about care plans, or legal and financial issues, she said.

“These disturbingly low disclosure rates in Alzheimer’s disease are reminiscent of rates seen for cancer in the 1950s and 60s, when even mention of the word cancer was taboo,” Kallmyer said.

Even though the benefits of promptly and clearly explaining a diagnosis of Alzheimer’s have been established in several studies, one prevalent reason for not disclosing diagnoses is a fear among caregivers that the news will create undue emotional distress, the association noted in a public statement on Tuesday.

The “2015 Alzheimer’s Disease Facts and Figures” report can be viewed online or downloaded from the Alzheimer’s Association site.