AN ACCURATE DIAGNOSIS CAN MARK THE DIFFERENCE BETWEEN EFFECTIVE TREATMENT AND UNEXPECTED COMPLICATIONS

Because Alzheimer’s disease can only be definitively diagnosed after death, it is often difficult to get an accurate diagnosis. The symptoms of Alzheimer’s are often mistaken for another condition, like delirium or Lyme disease, or treated as separate conditions rather than as part of a whole. Sometimes, it is only in the late stages of the disease that the puzzle pieces of Alzheimer’s fit together. And at this point, it is often too late for effective treatment.

Why is Alzheimer’s disease often misdiagnosed?

Kris Kristofferson’s dementia diagnosis turned out to be the result of Lyme diseae.

Let’s look at country music star, athlete, and actor Kris Kristofferson, for example. For many years, the superstar complained of memory loss, pain, and muscle spasms, among other symptoms. In 2013, Kristofferson was diagnosed with Alzheimer’s disease. However, after three years of steady decline, medications, and increasing symptoms, it was discovered that Kristofferson was actually suffering from Lyme disease, not Alzheimer’s.  

So what happened here?

In Kristofferson’s case, part of the problem is that both Lyme disease and Alzheimer’s can be difficult to definitively diagnose. Lyme disease bores into tissue, so a blood test cannot easily detect it. Similarly, according to the National Institute of Aging, a fairly accurate diagnosis of Alzheimer’s disease can be made through observation, biomarkers, and by ruling out other issues. Today, doctors’ detection of brain degeneration and the accuracy of Alzheimer’s diagnoses are improving. This is due in part to the introduction of improved brain scan technologies (like CT, fMRI, PET, and other scans). However, it isn’t until after death that a biopsy of the brain can reveal the specific cause of the degeneration. Often, but not always, it is advanced Alzheimer’s disease.

In this case, Kristofferson’s misdiagnosis meant three years of incorrect treatment. After only twenty days of Lyme disease treatment, his wife Lisa reported “his personality was back.”

“So, he really lives in the present and he feels good,” she said in a 2016 interview with Huffington Post. “We walked two miles yesterday. His physical health is incredibly good. All his symptoms of fibromyalgia, sleep apnea and twitching are now gone with the Lyme treatment. He has stayed off the two Alzheimer’s drugs and the antidepressant he was taking for the fibromyalgia. He is continuing to do treatment as needed. When I look back, his symptoms really should’ve caused his doctors to test him for Lyme and they missed it. Most doctors are just not looking for it.”

The symptoms of Alzheimer’s disease might look like other conditions.

It’s important to note that Kristofferson’s symptoms — particularly his issues with memory loss and spatial awareness — really did look like common Alzheimer’s-related dementia, especially for doctors unfamiliar with Lyme disease. As a result, Kristofferson was prescribed two different medications to control his symptoms for three years, and was only taken off of them when a spinal tap and an MRI ruled out Alzheimer’s.

The Alzheimer’s Association identifies these as the top 10 early symptoms of Alzheimer’s:

1. Memory loss that disrupts daily life
2. Challenges in planning or solving problems
3. Difficulty completing familiar tasks
4. Confusion with time or place
5. Trouble understanding visual images and spatial relationships
6. New problems with words in speaking or writing
7. Misplacing things and losing the ability to retrace steps
8. Decreased or poor judgment
9. Withdrawal from work or social activities
10. Changes in mood and personality

Unfortunately, some diagnoses incorrectly attribute the signs of Alzheimer’s to regular aging, even though the symptoms are far too severe. In other cases, doctors miss the signs of Alzheimer’s because they diagnose another degenerative condition, like Parkinson’s dementia, Lewy body dementia, and brain atrophy. 

According to a Mayo Clinic study from 2016, as many as 2 in 10 Alzheimer’s cases may be misdiagnosed. There is no one-size-fits-all blood test or scan that can accurately diagnose the disease. Because the symptoms determine an Alzheimer’s diagnosis, almost 22% of patients in the National Alzheimer’s Coordinating Center database received an incorrect Alzheimer’s disease diagnosis. Or worse — they had the disease but weren’t actually diagnosed.

Early, accurate diagnosis is key to successful treatment.

Alzheimer’s disease is complicated, for the patient, their caregivers, and their loved ones. Because of this, an early diagnosis is critical to planning for its later stages. Early financial planning and end-of-life decisions, for example, ensure someone with Alzheimer’s lives the rest of their life to the fullest and with the most enjoyment.

Similarly, early diagnosis makes it possible to slow the disease’s progression with early treatment. New treatment methods like electrical brain stimulation, art and music therapy, and hyperbaric oxygen therapy can all have a beneficial impact on improving memory and cognition for people with dementia. Likewise, toys, games, and activities designed for people in the earliest stages of Alzheimer’s can drastically slow the progress of the disease.

Like many diseases, early — and accurate — diagnosis is the key to successfully slowing Alzheimer’s progress and minimizing symptoms.  

What can we do to combat misdiagnoses?

The most critical thing we can do to combat misdiagnoses is to make sure our healthcare providers have the right information to give a diagnosis, and to never trust home tests or personal diagnoses over a doctor’s tests.

If you or a loved one suffer from memory loss and other Alzheimer’s-like symptoms, see a licensed healthcare professional as soon as possible. It’s also important to give your healthcare provider as much information as possible about symptoms, so they can form the most accurate picture of your overall health and give you the most accurate diagnosis possible. The Alzheimer’s Association offers many free resources, like the Doctor’s Visit Checklist, that help identify the extent of symptoms in easily collected, easily understood ways.

There are endless benefits tied to an early, accurate diagnosis, from emotional and social concerns to future planning, financial savings, and — most importantly — access to early treatment that could make a huge difference in quality of life.