Doctors don't tell most patients or caregivers about a diagnosis of Alzheimer's until the disease advances, advocacy group says

Every 67 seconds someone in the U.S. develops Alzheimer’s disease and most don't find out they have it until their disease becomes more advanced, according to a report by the Alzheimer's Association.

The organization's 2015 Alzheimer's Disease Facts and Figures report says only 45 percent of people with the disease, or their caregivers, were told their diagnosis by their doctor.

One reason, the report says, is that they don't want to cause the patient emotional distress, but the report says studies have found that "few patients become depressed or have other long-term emotional problems" when they learn of their diagnosis.

The Alzheimer's Association says early disclosure of the diagnosis "should be standard practice" because it allows the patient to participate in early decision making about their care plans, deal with legal and financial issues, decide if they would like to participate in research, and gives them time to fulfill lifelong plans. The association said in the release that not enough resources and education are in place to help medical providers with "best practices for telling patients and their families."

"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," DeeAnna Esslinger, executive director of the Greater Kentucky and Southern Indiana Chapter of the Alzheimer’s Association, said in a press release.

The report says an estimated 5.3 million Americans have Alzheimer’s disease, including 68,000 Kentuckians. And barring the development of medical breakthroughs, the report says the number of Americans with the disease will rise to 13.8 million by 2050. Other items from the report:

• Almost half a million people age 65 or older will develop Alzheimer’s in the U.S. this year.
• By 2050, an American will develop the disease an average of every 33 seconds.
• Two-thirds of Americans over age 65 with Alzheimer’s (3.2 million) are women.
• Alzheimer’sis the sixth-leading cause of death in the U.S.
• In Kentucky, 1,462 people died with Alzheimer’s in 2012, a 74 percent increase since 2000.
• Nationwide from 2000-2013, the number of Alzheimer’s deaths increased 71 percent, while deaths from other major diseases decreased.

The cost to care for Americans with Alzheimer's and other dementias in 2015 are estimated at $226 billion, of which $153 billion is the cost to Medicare and Medicaid alone, making Alzheimer's the costliest disease to society, the release says. The report projected this cost will increase to more than $1 trillion in 2050.

“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," Beth Kallmyer, vice president of constituent services for the Alzheimer’s Association, said in a release.

Most Kentuckians don't communicate with doctors electronically; most are confident about access to pricing information for care

Most Kentuckians don't communicate with their doctor electronically, according to the latest Kentucky Health Issues Poll.

The poll, taken Oct.8-Nov.6, found that 73 percent of Kentuckians have not communicated with their doctor using text, email or a website during the last year. A national poll found similar results.

This finding was consistent in all age groups, but there was a difference among socioeconomic groups.

Seventy-nine percent of those whose incomes are 200 percent of the federal poverty level or below said they had no electronic communication with their doctor in the past year, but only 66 percent of those above this level said they had had no electronic contact. In 2013, 200 percent of poverty level was $47,100 for a family of four.

Electronic communication with doctors was most common in Northern Kentucky and least common in Eastrern and Western Kentucky.

The Kentucky Health Information Exchange, the hub that connects participating providers with each other to share health information via certified electronic health records, is now working to connect patients to their electronic health records via a pilot program.

Research has found that patients who are better informed about their health and health care cost are more engaged with their health, according to the release.

Patients at UKHealthCare who have access to their "patient portals" seven days after discharge are an example of how few Kentuckians are engaging with their health care provider via electronics.

“About 8 to 10 percent of hospitalized patients look at their patient portals, of our inpatients,”Dr. Carol Steltenkamp, chief medical information officer at UKHealthCare, said in a phone interview “We would love for that to increase.”

Steltenkamp said that patients often don't understand how to use their portals and that the hospital is working diligently to educate them.

The poll also found that most Kentuckians think they can find out what doctors charge for treatments and procedures if they need this information, finding 36 percent extremely or very confident that they could find out how much treatments and procedures cost; 34 percent moderately confident and 28 percent not too confident or not confident at all. These answers did not vary by income, age or region.

The poll is conducted by the Institute for Policy Research at the University of Cincinnati and was funded by the Foundation for a Healthy Kentucky and Interact for Health, formerly the Health Foundation of Greater Cincinnati. It surveyed a random sample of 1,597 adults via landline and cell phone, and has a margin of error of plus or minus 2.5 percentage points.