March 27, 2015 |

Knowledge of Alzheimer’s diagnosis empowers people, association says

Disclosing a diagnosis of Alzheimer's disease to a person or his or her caregivers is unikely to cause long-term depression, according to research. Rather, the knowledge permits people to plan for the future and maximum the benefits of therapy.

Yet only 45 percent of people with Alzheimer’s disease or their caregivers say they were told the diagnosis by their physician, according to the Alzheimer’s Association’s 2015 Alzheimer's Disease Facts and Figures report. And most likely, those who learned of the diagnosis found out when the disease was in an advanced stage, according to the report.

Alzheimer’s facts

About 5.3 million Americans have Alzheimer’s disease, including about 5.1 million aged 65 or more years and 200,000 who have younger-onset disease. Without medical breakthroughs, the number will increase to 13.8 million by 2050.
About 473,000 people aged 65 or more years 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 Alzheimer’s every 33 seconds.
Two-thirds (3.2 million) of Americans aged more than 65 years who have Alzheimer’s 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 or more years.
From 2000 to 2013, the number of Alzheimer’s deaths increased 71 percent, whereas deaths from other major diseases decreased. 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.
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 the Medicare and Medicaid programs.
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, a contribution to the nation valued at $217.7 billion (valuing care at $12.17 per hour).

Source: 2015 Alzheimer's Disease Facts and Figures, Alzheimer's Association

The findings reflect problems for those with the progressive brain disease, said Beth Kallmyer, MSW, vice president of constituent services for the association, because learning the diagnosis later in its course may diminish a person’s capacity to participate in decision-making about care plans or legal and financial issues. It also may prevent someone from obtaining maximum benefit from treatment.

“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,” she said. “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.”

Telling someone with Alzheimer’s the truth about his or her diagnosis should be standard practice, the association maintains. Healthcare providers say they fear causing the patient emotional distress by revealing a diagnosis of Alzheimer’s disease. 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 diagnosis.”

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 increase as the American population ages. (See box, "Alzheimer's facts.")

“Alzheimer’s is a triple threat unlike any other disease—with soaring prevalence, lack of effective treatment and enormous costs,” Kallmyer said. “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. Congress must continue its commitment to the fight against Alzheimer’s by increasing funding for Alzheimer’s research by $300 million in fiscal year 2016, including increased federal research funding for better Alzheimer’s diagnostic tools to increase the certainty of diagnosis.”

Lois Bowers

Lois A. Bowers was senior editor of I Advance Senior Care / Long-Term Living from 2013-2015.