A patient’s right to know

Provided by Jared Paventi, Chief Communications Officer, Alzheimer’s Association, Central New York Chapter

The Alzheimer’s Association 2015 Alzheimer’s Disease Facts and Figures Report found that only 45 percent of people with Alzheimer’s disease and/or their caregivers say their doctor told them the diagnosis. In contrast, more than 90 percent of people with the four most common cancers (breast, colorectal, lung and prostate cancer) say their doctor or medical professional told them of their diagnosis.

   “People with Alzheimer’s have the right to know the truth about their diagnosis,” said Catherine James, chief executive officer of the Alzheimer’s Association. “The Alzheimer’s Association recommends healthcare providers deliver the news in a sensitive and supportive way that avoids unnecessary distress. Knowing the diagnosis enables someone to seek care and treatment early in the disease, participate in research trials and allows the person to participate in life activities, and make legal and financial plans while they are still able to.”

   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 may be diminished.

   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. “The report signals a call to medical professionals to understand and implement policies for disclosure of diagnosis, including disclosure of Alzheimer’s disease and other dementias,” James said. “Additionally, we believe more thorough education for medical students and practicing healthcare providers is necessary for 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 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. According to the report, an estimated 5.3 million Americans have Alzheimer’s disease in 2015, including 380,000 in New York. Barring the development of medical breakthroughs, the number of Americans with Alzheimer’s disease will rise to 13.8 million by 2050. The report also indicated 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. From 2000-2013, the number of Alzheimer’s deaths increased 71 percent, while deaths from other major diseases decreased.

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 1,017,000 Alzheimer’s caregivers in the Empire State providing 1.158 billion hours of unpaid care valued at more than $14 billion.

   “The burden borne by caregivers of individuals with Alzheimer’s disease and other forms of dementia extends far beyond their day-to-day impact,” James said. “Dementia caregivers had healthcare costs that were $771 million more than their non-caregiving peers in 2014, and we have not even touched on the cost felt by their employers or any out-of-pocket, non-reimbursable care-related expenditures.”

   To read the full text of the Alzheimer’s Association 2015 Alzheimer’s Disease Facts and Figures Report, visit www.alz.org.

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