Many people who have Alzheimer's disease are never told by their doctors that they have the brain disease, according to a report from the Alzheimer's Association. When patients or their caregivers were asked if their doctor had told them they had Alzheimer's only 45% said yes. In comparison, more than 90% of people with diseases such as breast or lung cancer had been told of their diagnosis.
The study was conducted with patients who had Medicare records that listed treatments specific to Alzheimer's. The researchers obtained information on Medicare claims for 2008 through 2010 and then compared that information to patient responses in a Medicare survey.
The researchers found that Alzheimer's patients were more likely to be told about their disease after it has progressed and after they have already lost the ability to take part in their own care.
Not informing a patient of their Alzheimer's diagnosis in its early may mean they cannot participate in and make decisions about their care and may prevent them from planning for the future. They also miss out on enrolling in clinical trials because Alzheimer's research accepts only people in the early stages of the disease.
This silence about Alzheimer's is similar to inhibitions that once existed about talking about cancer. At one time, cancer was not discussed openly and doctors did not always tell patients they had cancer. Doctors may fear giving emotionally distressing news about Alzheimer's but the same doctors have learned to give bad news about other diseases.
This finding is part of the association's 2015 Alzheimer's Disease Facts and Figures, which can be read at https://www.alz.org/facts/downloads/facts_figures_2015.pdf. In addition to this research, the report notes that there are an estimated 5.3 million Americans with Alzheimer's disease in 2015, including about 5.1 million people aged 65 and older, and about 200,000 individuals under age 65 who have younger-onset Alzheimer's. Alzheimer's is the sixth-leading cause of death in the United States and the fifth-leading cause of death for those aged 65 and older.