According to an Alzheimer’s Association report, 45% of people with Alzheimer’s disease or their caregivers said physicians told them of the diagnosis. In contrast, more than 90% of people with the four most common cancers (breast, colorectal, lung and prostate cancer) said they were told the diagnosis.
The 2015 Alzheimer’s Disease Facts and Figures report was released March 24 and published in the March issue of Alzheimer’s & Dementia, the journal of the Alzheimer’s Association. It also can be viewed online.
“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,” Beth Kallmyer, MSW, vice president of constituent services for the Alzheimer’s Association, said 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.”
The 2015 Facts and Figures report also found people with Alzheimer’s or their caregivers were more likely to say they were told the diagnosis by their physician after the disease had become more advanced. This is a problem, Kallmyer said, because learning the diagnosis later in the course of the progressive brain disease might diminish the person’s capacity to participate in decision-making about care plans, or legal and financial issues, and their ability to participate in research or fulfill lifelong plans also might be limited.
One of the reasons most commonly cited by healthcare providers for not disclosing an Alzheimer’s diagnosis is fear of causing the patient emotional distress. However, according to the 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.”
According to the Chicago-based Alzheimer’s Association, telling the person with Alzheimer’s the truth about his or her diagnosis should be standard practice.
“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, chairman 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 healthcare providers on how to effectively make and deliver an Alzheimer’s diagnosis.”
Klunk is a distinguished professor of psychiatry and neurology at the University of Pittsburgh School of Medicine, where he also serves as co-director of the Alzheimer’s Disease Research Center.
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 also might increase chances of participating in clinical drug trials.
Prevalence and impact
The 2015 report also provides an in-depth look at the prevalence, incidence, mortality and economic impact of Alzheimer’s disease and other dementias – all of which continue to rise as the American population ages.
Prevalence, incidence and mortality:
- According to the report, an estimated 5.3 million Americans have Alzheimer’s disease in 2015. This includes an estimated 5.1 million people ages 65 and older, and approximately 200,000 individuals younger than 65 who have younger-onset Alzheimer’s. Barring the development of medical breakthroughs, the number is projected to rise to 13.8 million by 2050.
- Approximately 473,000 people ages 65 or older will develop Alzheimer’s in the U.S. in 2015. Every 67 seconds, someone in the U.S. develops Alzheimer’s. By mid-century, an American will develop the disease every 33 seconds.
- Two-thirds (3.2 million) of Americans older than 65 with Alzheimer’s are women.
Alzheimer’s disease is the sixth-leading cause of death in the U.S., and the fifth-leading cause of death for those ages 65 and older. From 2000-2013, the number of Alzheimer’s deaths increased 71%, while deaths from other major diseases decreased.
Heart disease deaths decreased 14%; stroke deaths, 23%; HIV deaths, 52%; prostate cancer deaths, 11%; and breast cancer deaths, 2%.
Costs and financial impact:
- 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.
- Total payments 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).
- In 2014, the 15.7 million family and other unpaid caregivers of people with Alzheimer’s disease and other dementias provided an estimated 17.9 billion hours of unpaid care valued at $217.7 billion (with care valued at $12.17 per hour).
“Alzheimer’s is a triple threat unlike any other disease — with soaring prevalence, lack of effective treatment and enormous costs,” Kallmyer said in the release. “Promising research is ready for the pipeline, but there’s an urgent need to accelerate federal funding to find treatment options that effectively prevent and treat Alzheimer’s.”