Alzheimer's Diagnosis Disclosure Rates 'Disturbingly Low'

Megan Brooks

March 24, 2015

Less than half (45%) of people with Alzheimer's disease (AD) or their caregivers have been told they have the diagnosis by their doctor, according to the Alzheimer's Association's 2015 Alzheimer's Disease Facts and Figures report released today.

And that's unacceptable, Beth Kallmyer, MSW, vice president of constituent services for the Alzheimer's Association, said during a media briefing. "Patients have a right to know," she said, and disclosing the diagnosis "should be standard practice."

"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," she added in a news release. "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."

Physician Education Needed

Not surprisingly, patients with Alzheimer's or their caregivers are more likely to be told the diagnosis by their doctor after the disease has become more advanced. This also poses problems, Kallmyer said. Learning the diagnosis later may mean a 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 clinical trials or fulfill lifelong plans may be limited.

Among the reasons most often cited by healthcare providers for not disclosing an Alzheimer's diagnosis is fear of causing emotional distress, but studies on this issue have found that few patients become depressed or have other long-term emotional problems because of the diagnosis, the report says.

Other top reasons for not disclosing the diagnosis are diagnostic uncertainty, time constraints, lack of support, communication difficulties, patient or caregiver wishes, and stigma.

"Based on the principles of medical ethics, there is widespread agreement among healthcare professionals that people have the right to know and understand their diagnosis, including Alzheimer's disease," William Klunk, MD, PhD, chair of the Alzheimer's Association medical and scientific advisory council, said in the release. "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 Alzheimer's Association is calling for education of health providers starting in medical school on how to appropriately disclose the diagnosis of Alzheimer's disease.

The report also includes updated figures on Alzheimer's disease prevalence, incidence, mortality and costs. Among the highlights:

  • An estimated 5.3 million Americans have Alzheimer's disease in 2015, and the number is projected to rise to 13.8 million by 2050.

  • Approximately 473,000 people age 65 or older will develop Alzheimer's in the United States in 2015. Every 67 seconds, someone in the United States develops Alzheimer's. By mid-century, an American will develop the disease every 33 seconds.

  • Two thirds (3.2 million) of Americans over age 65 with Alzheimer's disease are women.

  • Alzheimer's disease is the sixth leading cause of death in the United States and the fifth leading cause of death for those aged 65 and older. From 2000 to 2013, the number of Alzheimer's deaths increased 71% while deaths from other major diseases decreased.

  • Direct costs of caring for those with Alzheimer's and other dementias are estimated at $226 billion in 2015, of which $153 billion is the cost to Medicare and Medicaid alone. Total costs for healthcare, long-term care, and hospice for people with Alzheimer's and other dementias are projected to increase to more than $1 trillion in 2050 (in current dollars).

Alzheimer's disease research remains "woefully underfunded," said Keith Fargo, PhD, director of scientific programs and outreach at the Alzheimer's Association. The Alzheimer's Association is asking Congress to increase funding for Alzheimer's research by $300 million in fiscal year 2016, which would bring it to $886 million for the year.

The report is available at


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