Diagnosing Alzheimer’s disease is crucial for patients to plan for the future, but many people are being deprived this information according to a new study. The Alzheimer’s Association found that only 45% of people with Alzheimer’s disease or their caregivers report they were told the diagnosis by their doctor.

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A prompt and clearly explained diagnosis can help individuals to access medical care and support services and give them the opportunity to make informed decisions about current and future treatment plans.

The 2015 Alzheimer’s Disease Facts and Figures report also found that over 90% of people diagnosed with the four most prevalent cancers – breast, colorectal, lung and prostate – state that they were told their diagnosis.

“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,” says Beth Kallmyer, vice president of Constituent Services for the Alzheimer’s Association.

The Alzheimer’s Association estimate that 5.3 million Americans have Alzheimer’s disease, including an estimated 5.1 million people aged 65 and above. They believe that this number will rise to a total of 13.8 million by 2050.

Alzheimer’s disease is a neurodegenerative disorder, whereby there is progressive brain cell death over time, characterized by cognitive decline until the individual is severely impaired.

According to the report, people with Alzheimer’s or their caregivers were more likely to report being told the diagnosis only when the disease had reached a more advanced stage. Receiving a diagnosis later in the course of the disease can compromise an individual’s capacity to plan for future care, finances and the fulfillment of life goals.

“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,” says Kallmyer.

A common reason for this lack of disclosure cited by health care providers was the fear of causing a patient emotional distress. Despite this, the report states that other studies exploring this issue have found that few patients become depressed or experience other long-term emotional problems after receiving a diagnosis.

“Based on the principles of medical ethics, there is widespread agreement among health care professionals that people have the right to know and understand their diagnosis, including Alzheimer’s disease,” said Dr. William Klunk, chair of the Alzheimer’s Association Medical and Scientific Advisory Council.

In addition to the revelation of low disclosure rates in Alzheimer’s disease, the report also details the prevalence, mortality and economic impact of the condition and other dementias. Kallmyer explains why the disease is such a problem:

Alzheimer’s is a triple threat unlike any other disease – with soaring prevalence, lack of effective treatment and enormous costs. 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.”

From 2000-13, deaths from Alzheimer’s disease increased by 71%, in contrast to a decrease in deaths from other major diseases such as heart disease and stroke. Alzheimer’s disease is the sixth-leading cause of death in the US and the fifth-leading cause among people aged 65 and above.

The disease is also a huge financial burden; the report describes it as the costliest disease to society. In 2015, payments for caring for people with Alzheimer’s disease and other dementias are estimated at $226 billion, with $153 billion of this total coming from Medicare and Medicaid. These payments are projected to increase by 2050.

“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,” Kallmyer states.

“The findings from this report shine a light on the need for more education for medical students and practicing health care providers on how to effectively make and deliver an Alzheimer’s diagnosis,” concludes Dr. Klunk.

Recently, Medical News Today reported on a study suggesting that a new diet developed by researchers could significantly reduce the risk of Alzheimer’s disease.