NEW ALZHEIMER’S ASSOCIATION REPORT FINDS LESS THAN HALF OF PEOPLE WITH ALZHEIMER’S DISEASE SAY THEY WERE TOLD THE DIAGNOSIS

Written by Theresa Rose on March 25, 2015

And Iowa has the 5th highest Alzheimer’s death rate in America

IOWA, March 24, 2015 – The Alzheimer’s Association 2015 Alzheimer’s Disease Facts and Figures report, released today, found that only 45 percent of people with Alzheimer’s disease or their caregivers say they were told the diagnosis by their doctor. In contrast, more than 90 percent of people with the four most common cancers (breast, colorectal, lung and prostate cancer) say they were told the diagnosis.

“This disturbingly low diagnosis disclosure rate for Alzheimer’s is reminiscent of how doctors approached disclosing a cancer diagnosis 60 years ago. People with Alzheimer’s have the right to know the truth about their diagnosis just like cancer patients have the right to know they have cancer. The Alzheimer’s Association recommends all healthcare providers deliver the news in a sensitive and supportive way that avoids unnecessary distress. Providing a diagnosis allows them to maximize his or her quality of life and play an active role with the family in planning for the future,” says Melissa Kramer, Communications Director of the Alzheimer’s Association Greater Iowa Chapter.

The Alzheimer’s Association 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. According to the Association, 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
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.

The Alzheimer’s Association believes that the findings of the special report call for:
• All healthcare providers to understand and implement their professional policies for disclosure of diagnosis, including disclosure of Alzheimer’s disease and other dementias.
• Additional and more thorough education for medical students and practicing healthcare providers on best practices for making and delivering a diagnosis of Alzheimer’s or other dementia.

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.

The Alzheimer’s Epidemic and Its Impact
The 2015 Facts and Figures report 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 at staggering rates 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, including 63,000 in Iowa. Barring the development of medical breakthroughs, the number of Americans with Alzheimer’s disease will rise to 13.8 million by 2050.
• Almost half a million (approx. 473,000) people age 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 over age 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 age 65 and older. Iowa has the highest Alzheimer’s death rate in America.
• From 2000-2013, the number of Alzheimer’s deaths increased 71 percent, while deaths from other major diseases decreased.
o Heart disease deaths decreased 14 percent; stroke deaths, 23 percent; HIV deaths, 52 percent; prostate cancer deaths, 11 percent; and breast cancer deaths, 2 percent.

Costs and Financial Impact
• Alzheimer’s is the costliest disease to society. 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 health care, 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, a contribution to the nation valued at $217.7 billion (with care valued at $12.17 per hour).
• There are 134,000 Alzheimer’s caregivers in Iowa providing 152 million hours of unpaid care valued at $1.8 billion.

Locally, the Alzheimer’s Association Greater Iowa Chapter provides support, education and services to those with dementia, caregivers and family members through local support groups, educational conferences, workshops, care consultations, a 24/7 Helpline 800.272.3900, as well and printed and online educational materials and resources.

Full text of the Alzheimer’s Association 2015 Alzheimer’s Disease Facts and Figures report can be viewed at www.alz.org/greateriowa The report will also appear in the March 2015 issue of Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association (volume 11, issue 3), at www.alzheimersanddementia.com.

Alzheimer’s Association 2015 Alzheimer’s Disease Facts and Figures
The Alzheimer’s Association 2015 Alzheimer’s Disease Facts and Figures report is a comprehensive compilation of national statistics and information on Alzheimer’s disease and related dementias. The report conveys the impact of Alzheimer’s on individuals, families, government and the nation’s health care system. Since its 2007 inaugural release, the report has become the preeminent source covering the broad spectrum of Alzheimer’s issues. The Facts and Figures report is an official publication of the Alzheimer’s Association.

Alzheimer’s Association
The Alzheimer’s Association is the world’s leading voluntary health organization in Alzheimer’s care, support and research. It is the largest nonprofit funder of Alzheimer’s research. The Association’s mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Its vision is a world without Alzheimer’s. Visit www.alz.org/greateriowa or call 800.272.3900.