The Alzheimer's Association's 2015 Alzheimer's Disease Facts and Figures report found that only 45% of people with Alzheimer's disease or their caregivers say they were told the diagnosis by their doctor. In contrast, more than 90% of people with the four most common cancers (breast, colorectal, lung and prostate cancer) say they were told the diagnosis.
"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," said Beth Kallmyer, MSW, Vice President of Constituent Services for the Alzheimer's Association.
"It is of utmost importance to respect people's autonomy, empower them to make their own decisions and acknowledge that people with Alzheimer's have every right to expect truthful discussions with their physicians. When a diagnosis is disclosed, they can better understand the changes they are experiencing, maximize their quality of life, and often play an active role in planning for the future."
The 2015 Facts and Figures report also found that 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. 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.
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."
Benefits of Disclosing an Alzheimer's Diagnosis
Telling the person with Alzheimer's the truth about his or her diagnosis should be standard practice. Disclosure can be delivered in a sensitive and supportive manner that avoids unnecessary distress.
"Based on the principles of medical ethics, there is widespread agreement among health care professionals that people have the right to know and understand their diagnosis, including Alzheimer's disease," said William Klunk, M.D., Ph.D., Chair of the Alzheimer's Association Medical and Scientific Advisory Council. "The findings from this report shine a light on the need for more education for medical students and practicing health care providers on how to effectively make and deliver an Alzheimer's diagnosis."
The benefits of promptly and clearly explaining a diagnosis of Alzheimer's have been established in several studies. Benefits include better access to quality medical care and support services, and the opportunity for people with Alzheimer's to participate in decisions about their care, including providing informed consent for current and future treatment plans. 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.
For more information on Alzheimer’s care, contact Spring Arbor.