To Diagnose or Not To Diagnose

Common Questions about Finding Answers

Diagnosing dementia or Alzheimer’s is a process with several steps.

When Arizona resident Susan Christianson’s* memory lapses went from annoying to concerning, she and her husband decided to raise the issue with their primary care physician. The doctor examined Ms. Christianson, then 73, and referred her to a neurologist. Following a series of in-office examinations and two MRIs, the neurologist determined that Ms. Christianson had suffered a series of what were described as “mini strokes,” which were the probable cause of her worsening cognitive issues. The official diagnosis at that point was vascular dementia. Upon her passing several years later, her family arranged an autopsy that defined Ms. Christianson’s condition as likely Alzheimer’s disease (AD) with some vascular features.

Martin Bassett, a retired writer from Michigan, began to notice minor cognitive issues when he was in his mid- 60s. His physician assured him that his symptoms were just normal signs of aging. Still, Mr. Bassett decided at the age of 67 to apply for long-term care insurance as a way of covering his bases. When he failed the memory test given over the phone during the application process, he returned to his doctor with serious concerns. The doctor sent him to a psychologist specializing in neurocognitive testing. The initial diagnosis: mild cognitive impairment likely caused by hypertension. Eighteen months later, Mr. Bassett returned to the same clinician for follow-up tests. This time, the psychologist noted a dramatic decrease in function. With additional input from a neurologist, Mr. Bassett received an updated diagnosis of dementia, likely caused by blows to the head sustained on the football field and in the boxing ring during his years as a student athlete.

Floridian Angela Morrison was 73 when she asked her doctor to recommend a specialist who might be able to find the cause of what she perceived as increasing forgetfulness. As Ms. Morrison feared, a geriatrician felt that her MRI pointed to the likelihood that she was experiencing the early stages of AD. She and her husband were devastated, but they quickly put their legal and financial affairs in order, discussed future plans and joined a local support group. Five years later, when Ms. Morrison’s symptom had not changed, she saw a neurologist. This time, after undergoing extensive neurocognitive screening, she was told that her memory issues were nothing more than typical age-related lapses exacerbated by medication side effects; her earlier AD diagnosis had been incorrect.

Getting a diagnosis can be an important first step in planning ahead.

Seeking a diagnosis for memory impairment can be a lot like memory impairment itself: confusing and potentially frightening. Doctors’ approaches can differ, answers can vary and the proper way forward can be unclear. However, for many individuals and loved ones living with cognitive issues, pursuing a diagnosis is the first step toward gaining a sense of control over what often feels like an uncontrollable situation.

According to neurologist Ronald Petersen, MD, PhD, director of the Mayo Clinic Alzheimer’s Research Center and an active member of the American Academy of Neurology, there are many important reasons to seek a diagnosis. For example, medical exams can rule out perfectly treatable medical conditions that affect memory but have nothing to do with degenerative brain disease. And in cases where AD or other forms of dementia are definitively diagnosed, it can give patients and their families the opportunity to discuss options. Dr. Petersen addresses some of the most common questions people have about how and why to pursue a diagnosis for memory loss.

What is the best way to start the diagnostic process?
If you or a loved one is worried about memory loss, start your quest for information close to home. Survey family members, friends and co-workers to see if they have noticed you becoming more forgetful. If they have, then the next step is to make an appointment with your general practitioner. “Your personal physician knows you well and is familiar with your other medical issues,” says Dr. Petersen. “It’s quite possible that your memory lapses might be related to another condition, like high blood pressure, diabetes, breathing problems, or even anxiety or depression. Or you may be taking a medication that is known to alter memory.” In many cases, people’s memory is impaired by fixable conditions.

Which doctors diagnose Alzheimer’s disease?
If your general practitioner rules out other causes and recommends that you see a specialist for your memory issues, you will likely be referred to a psychiatrist, a neurologist, and/or a geriatrician. (In some cases, PhD psychologists also participate in the assessment and therapeutic care of individuals with memory loss but they are not licensed to dispense medications.) The ideal care team mix depends on each patient’s particular case.

What tests are used to diagnose?
Typically, a mix of tests are conducted to identify the precise nature of a person’s memory issues. In addition to in-office exams (where thorough medical histories should be reviewed), people will receive some combination of cognitive and neuropsychological tests, neurological evaluations, brain scans, lab tests and psychiatric evaluations. “Part of the in-office exam is some sort of mental assessment, such as a Short Test of Mental Status like we do here at the Mayo Clinic,” explains Dr. Petersen. “Even though these tests can be inadequate, they give the clinician a feeling of whether something serious is going on. If the screening assessment is normal, it doesn’t necessarily mean everything is normal but it’s somewhat reassuring.” If the doctor feels it is warranted, getting an image of the brain may be the next step. An MRI can provide critical information, including things to be ruled out as well as additional information about the suspected causes of the problem. By looking at a picture of what Dr. Petersen refers to as “the organ of interest,” doctors can make sure that the problems are not being caused by a brain tumor, hydrocephalus, or stroke.

How long does the typical diagnostic process take?
If a medical exam or test reveals an obvious cause of memory impairment, then the diagnostic process can be quick and clear. However, if AD or another neurodegenerative cognitive condition is suspected, then multiple appointments and follow-ups are necessary, which can take a matter of months. “If a diagnosis of some type of cognitive impairment is made, then the interval of follow-up depends on the specific diagnosis and its causes,” says Dr. Petersen. “If it’s a degenerative disease, then we’ll want to see you again in six months or a year. If it’s sleep apnea or a medication side effect, then we’ll want to see you sooner.”

Is getting diagnosed always preferable?
Some people living with the realities of memory loss might wonder whether it’s even worth pursuing a diagnosis; whether knowing the clinical name for their condition really makes any difference. According to Dr. Petersen, this is an understandable concern. However, even though getting a diagnosis might be frightening or threatening, he feels it’s always better to have the information. “First of all, it’s worth getting evaluated because you may be told you’re really okay; that your memory issues are perfectly normal symptoms of age or caused by something that’s treatable,” he notes. “On the other hand, if testing points to something in the Alzheimer’s ballpark, there are medications that can help.” In addition, he explains, if a person learns that his or her condition is degenerative before symptoms become too severe, that individual can still participate in family discussions regarding short- and long-term care strategies. “It’s always better to know than put your head in the sand,” he says.

Nobody wants a diagnosis of Alzheimer’s disease. But information can be very powerful—and empowering. With a diagnosis in hand, patients and loved ones can make more informed plans for the future while making the most of the present.

*Names and locations changed to protect privacy.

Exams and Tests
To identify the cause(s) of memory issues, doctors perform a variety of tests. Each exam depends on the patient’s symptoms and the clinician’s preferences, but most cognitive assessments include some combination of the following: