What you don’t know will hurt you: If you have Alzheimer’s disease, the chances are better than half that your doctor hasn’t told you



In the fall of 2014, Winchester resident Katrina Yates noticed that her mother’s memory problems were getting increasingly worse. Katrina’s dad had always cared for his wife, but when he passed away, her mom moved from Cincinnati to live with her in Winchester.

Katrina’s mother was referred to a neurologist in Lexington. It the first appointment, the neurologist met with her mother for five minutes and sent her to get an MRI. A follow-up appointment was set for three months later. Frustrated and without answers, information or a diagnosis, Katrina and her mother were left to wait for the MRI results.

Prior to the three-month follow-up appointment, her mother fell and was sent to the emergency room. Katrina’s mom was missing out on the potential benefit of earlier treatment, when it’s likely to be more effective, and the chance to have a voice in planning how she wanted to live the rest of her life.

Katrina’s mom is not alone in her experience.  The 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) say they were told the diagnosis.

Today, we’re in the same place with Alzheimer’s disease that we were with cancer 50 or 60 years ago.  The word cancer was taboo, and doctors didn’t want to talk about it because they didn’t know how to tell patients that there wasn’t much medically that could be done. But when people started to realize the huge numbers of people who had cancer, their voices started getting louder until they were heard. Soon after, research was funded at a level that has resulted in so much progress.

Those of us dealing with Alzheimer’s have to raise our voices until we’re heard. And there are a lot of us! An estimated 5.3 million people today have the disease – but that number will grow to 16 million by mid-century. It’s already the most expensive disease in America – costing an estimated $226 billion this year. Nearly one in every three seniors has Alzheimer’s or another dementia.

All healthcare providers need to understand and follow through on their profession’s policies for disclosing Alzheimer’s disease. 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 Kentucky and Southern Indiana Alzheimer’s Association chapter offers a various array of online and in person support.  The chapter will also host 12 Walk to End Alzheimer’s events this September and October. These events are the largest annual fundraisers for Alzheimer’s Association, and the money goes to research toward a cure, as well as local training and support services for families facing Alzheimer’s. The first walk is on September 21 at Preston Miller Park. To register visit alz.org/kyin call (800) 272-3900.

DeeAnna Esslinger is executive director of the Greater Kentucky and Southern Indiana Chapter of the Alzheimer’s Association.