A new report by the Alzheimer’s Association’s discovered that only 45 percent of people with Alzheimer’s disease or their caregivers say they were told the diagnosis by their doctor.
Although physicians may be fearful of causing a patient distress, researchers found that more than 90 percent of people with the four most common cancers (breast, colorectal, lung, and prostate cancer) 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, M.S.W, 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 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.
Kallmyer believes 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.
Additionally, a diagnosis after the disease has become advanced may prevent individuals from participating in research or limit their ability to fulfill lifelong plans.
Although providers are fearful of the distress that may accompany an Alzheimer’s diagnosis, emerging research suggests few patients become depressed or have other long-term emotional problems because of the diagnosis.
According to the Alzheimer’s Association, 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.
“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.
Source: Alzheimer’s Association