Doctor giving man checkup in exam room

‘I’m Worried I Have Early Signs of Dementia. My Doctor Isn’t Taking Me Seriously’

By | June 12th, 2024

Some readers have told us their doctors aren't listening when it comes to their concerns about memory issues and other cognitive symptoms. Here's how to advocate for yourself and get the correct diagnosis.

One reader recently wrote to us concerned that they have Alzheimer’s. “My memory has gotten a lot worse,” this Being Patient reader commented. “I know other family and friends have noticed it as well.” But, the story continued, this person’s doctor has been dismissive of their concerns — for several years.

This reader isn’t alone: Throughout my reporting on dementia and other complex illnesses like long COVID and myalgic encephalomyelitis/chronic fatigue syndrome, I’ve spoken with multiple patients who have had their symptoms dismissed or ignored by doctors.

I’ve also had personal experience with having my symptoms dismissed: Before I was diagnosed with obstructive sleep apnea, I visited multiple doctors to try and figure out why I felt physically and mentally exhausted all the time. One cardiologist ignored my symptoms and my medical history, and theorized that I was either depressed (I had already mentioned my mental health symptoms were in remission) or out of shape and lazy. 

These experiences happen to everyone, but research shows that women and people of color are even more likely to have serious symptoms dismissed by their doctors.

Both experts and patients say that the key to self-advocacy is persistence — sometimes, this means getting a second, third, or fourth opinion from other doctors. Dr. Jason Karlawish, co-director of the Penn Memory Center, suggests looking for experts in diagnosing cognitive problems — a geriatrician, neurologist, or psychiatrist specializing in evaluating and caring for people with cognitive symptoms. 

Many patients with early-onset Alzheimer’s, in particular, struggle to get a timely diagnosis. One woman, Michele Hall, made several trips to see various doctors, trying to understand why she, an attorney in a hard-hitting job, was experiencing a sudden loss of ability to spell and recognize words. Doctor after doctor told her it was just stress. Hall persisted. Eventually, she was diagnosed with early-onset Alzheimer’s.

Less severe memory problems can also go undiagnosed. Memory lapses might signal mild cognitive impairment — a condition that is sometimes a precursor to dementia but can also be caused by reversible problems like vitamin or hormone deficiencies. The earlier that doctors can figure out what’s causing a person’s MCI, the sooner a person can get treatment. And for some underlying causes, that treatment might reverse the memory loss, and even prevent dementia.

If the underlying cause of MCI is Alzheimer’s or another form of dementia, having a correct diagnosis early is still helpful: It gives you time to change your lifestyle, participate in clinical trials, and see if you qualify for Leqembi.

Alzheimer’s and dementia diagnosis are lengthy, multi-step processes that can only be done by specialists through special cognitive tests and often, a brain scan called an MRI. Early cognitive testing, which a doctor might undertake (or refer you to a specialist for) if you’re concerned you’re experiencing MCI or dementia early signs, can be a very helpful baseline years down the road to help your doctors understand the rate of possible decline.

According to experts at the Dementia Action Alliance and the National Institute on Aging, to make the most of one’s doctor’s visit, patients should:

  1. Complete paperwork before your appointment.
  2. Make a prioritized list of the concerns you want to bring up.
  3. Bring all the prescription drugs, over-the-counter medicine, vitamins and supplements you take in a bag.
  4. Consider bringing a friend or family member who can help you during the appointment.
  5. Bring a notebook with you to write questions or take notes.
  6. Ask the doctor to repeat or explain anything you don’t understand.
  7. Make sure you have a shared understanding of your health goals and next steps with your doctor.

Some patients have mentioned to me they’ve found it helpful, when not knowing how to talk to their doctor about their concerns, or when their doctor isn’t taking them seriously, to print out articles and bring them to their next appointment. Have a look at these resources, educate yourself, and don’t give up if you think your doctor should take a second look.

Can You Treat, Stop, or Reverse MCI? Here’s What the Science Says

MCI May Be Reversible — Many Go Undiagnosed Until It’s Too Late

Emily Paolillo: What is MCI and How Is It Diagnosed?


‘Don’t Let Doctors Dismiss Your Concerns:’ A Neurologist on Diagnosing Dementia

What Is FTD? Dementia Experts Explain Symptoms, Diagnosis and Caregiving

Misdiagnosed: Why Is a Dementia Diagnosis So Hard to Get Right?

This Neuroscience Nurse Got Early-Onset Alzheimer’s: Her Early Signs and Her Journey Since

Doctors Told Her Her Early-Onset Alzheimer’s Was ‘Just Stress’

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