Alzheimer Patients Left Out of the Loop

Fewer than half of patients with Alzheimer are told the diagnosis.

Fewer than half of persons with Alzheimer disease (AD) say their doctor told them the diagnosis, according to the Alzheimer’s Association’s 2015 Alzheimer’s Disease Facts and Figures report.

In contrast, more than 90% of persons with the 4 most common cancers (breast, colorectal, lung, and prostate) say they were told the diagnosis.

In the report, only 45% of persons with AD or their caregivers say they were told the diagnosis by their doctor. They were more likely to say they were told the diagnosis by their doctor after the disease had become more advanced.

Learning the diagnosis later in the course of the disease may mean the person’s capacity to participate in decision making about care plans or legal and financial issues may be diminished, it was noted, and their ability to participate in research or fulfill lifelong plans may be limited.

Fear of causing the patient emotional distress is an often cited reason for not disclosing an AD diagnosis. According to the report, however, “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 who has AD the truth about his or her diagnosis should be standard practice, the Alzheimer’s Association stated. Disclosure can be delivered in a sensitive and supportive manner that avoids unnecessary distress.

“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 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,” said William Klunk, MD, PhD, chair of the Alzheimer’s Association Medical and Scientific Advisory Council.

The 2015 Facts and Figures report provides an in-depth look at the prevalence, incidence, mortality, and economic impact of AD and other dementias. A few highlights:

• An estimated 5.3 million Americans have AD in 2015, including an estimated 5.1 million persons age 65 years and older. The number of persons with AD could rise to 13.8 million by 2050.

• AD will develop in almost half a million persons age 65 years or older in the United States in 2015.

• Two-thirds of Americans older than 65 years with AD are women.

• AD is the sixth-leading cause of death and the fifth-leading cause of death for those age 65 years and older in the United States.

• Total 2015 payments for caring for those with AD and other dementias are estimated at $226 billion. Total payments for health care, long-term care, and hospice for these patients are projected to increase to more than $1 trillion in 2050.

Full text of the report can be viewed at www.alz.org/facts. The report will also appear in the March 2015 issue of Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association (www.alzheimersanddementia.com).