from The Alzheimer’s Association
Less Than Half of People with Alzheimer’s Disease Were Told by Doctors
Louisville, KY – If you have Alzheimer’s disease, the chances are better than half that your doctor hasn’t told you.
The Alzheimer’s Association 2015 Alzheimer’s Disease Facts and Figures report 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.
“These disturbingly low disclosure rates for Alzheimer’s are reminiscent of disclosure rates for cancer in the 1950s and 1960s, when the word ‘cancer’ was taboo,” said DeeAnna Esslinger, Executive Director of the Greater Kentucky and Southern Indiana Chapter of the Alzheimer’s Association. “But telling patients the truth about their diagnosis allows them to seek treatment early, when it’s likely to be more effective, and gives them a voice in planning how they want to live the rest of their lives.”
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.
“All healthcare providers need to understand and follow through on their profession’s policies for disclosing Alzheimer’s disease,” Esslinger said, adding, “We see a need for additional and more thorough education for both medical students and practicing physicians on the best practices for telling patients and their families.”
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 68,000 in Kentucky and 111,000 in Indiana. 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 ages 65 and older. In Kentucky, 1,462 people died with Alzheimer’s in 2012, a 74 percent increase since 2000. In Indiana, 2,104 people died with Alzheimer’s in 2012, a 73 percent increase since 2000.
- Nationwide 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).
- In Kentucky, 269,000Alzheimer’s caregivers provided 306 million hours of unpaid care, valued at $3.7 billion in 2014. In Indiana, 332,000 caregivers provided 379 million hours of unpaid care, valued at $4.6 billion.
“The local chapter offers online and in person support groups, educational sessions and a 24/7 hotline for individuals, caregiver and families facing Alzheimer’s,” Esslinger said. “Alzheimer’s is an incredibly difficult diagnosis to hear, but we’re here to help you navigate the coming months and years with detailed information, helpful tips and true compassion.”
The full text of the Alzheimer’s Association 2015 Alzheimer’s Disease Facts and Figures report can be viewed atwww.alz.org.
