The Alzheimer's Association 2015 disease facts and figures report, released Tuesday, found that only 45 percent of Minnesotans with Alzheimer's were promptly told the diagnosis by their doctor – in contrast with more than 90 percent of people with the four most common cancers (breast, colorectal, lung and prostate cancer) being told their diagnosis.
People with Alzheimer's, or their caregivers, were more likely to say they were told the diagnosis by their doctor after the disease had become more advanced, the report said.
"This is a problem because learning the diagnosis later in the course of the progressive brain disease may mean the person's capacity to participate in decision making about care plans, or legal and financial issues, may be diminished, and their ability to participate in research or fulfill lifelong plans may be limited," the association said.
One of the reasons most commonly cited by health care providers for not disclosing an Alzheimer's diagnosis is fear of causing the patient emotional distress. However, according to the new report, "studies that have explored this issue have found that few patients become depressed or have other long-term emotional problems because of the [Alzheimer's] diagnosis."
Telling the person with Alzheimer's the truth about his or her diagnosis should be standard practice, the Alzheimer's Association said. Disclosure can be delivered in a "sensitive and supportive manner" that avoids unnecessary distress.
"Knowing the diagnosis early enables the person with Alzheimer's to get the maximum benefit from available treatments, and may also increase chances of participating in clinical drug trials that help advance research," the association said.
An estimated 5.3 million Americans have Alzheimer's in 2015, and 89 thousand of them are in Minnesota. Alzheimer's is the costliest disease to society -- total 2015 payments for caring for those with Alzheimer's and other dementias are estimated at $226 billion, of which $153 billion is the cost to Medicare and Medicaid alone.
Two-thirds (3.2 million) of Americans over age 65 with Alzheimer's are women.
Full text of the Alzheimer's Association 2015 Alzheimer's Disease Facts and Figures report can be viewed at www.alz.org