When the Diagnosis Does Not Feel Right

Maybe it came too fast, or too slow, or it does not match what you are living. Asking for a second look is reasonable, and sometimes it changes things.

Is it OK to ask for a second opinion?

Yes. It is an ordinary request, and with a diagnosis this consequential, many specialists expect it.

People hesitate because they do not want to seem ungrateful or to insult a doctor they will keep seeing. But a dementia diagnosis decides a lot: which medicines are safe, whether you qualify for newer treatments, how you plan for work and money, and what your family prepares for. Getting it right is worth a second look.

Some people have the opposite problem. One person in a caregiver group wrote that they had to threaten to change doctors before anyone would give them a diagnosis at all. If you have been told for years that it is "just stress" or "normal aging" and you know it is not, that is also a reason to see someone else.

How often is a dementia diagnosis wrong?

Less often than it used to be, now that biomarker tests exist. Without them, the error rate at even the best centers was not small.

The clearest evidence comes from comparing diagnosis in life with what is found at autopsy. A 2012 study in the Journal of Neuropathology and Experimental Neurology looked at 919 people seen at NIA-funded Alzheimer's centers between 2005 and 2010. Of 526 people diagnosed with probable Alzheimer's disease, about 17% had too little Alzheimer's pathology to account for their symptoms. Many of them had other conditions instead: frontotemporal degeneration, vascular disease or Lewy body disease. Depending on the definitions used, the clinical diagnosis caught 71% to 87% of true Alzheimer's cases.

Those were specialist centers, and the study predates routine biomarker testing. Today, an amyloid PET scan, a spinal fluid test, or a blood test that meets the Alzheimer's Association's accuracy standards can confirm or rule out Alzheimer's pathology while you are alive. If your diagnosis was made on symptoms and memory testing alone, asking whether a biomarker test would help is a reasonable question.

When does a second opinion make the most sense?

When the type of dementia is uncertain, when the symptoms do not fit, when you are younger, or when nobody has looked for other causes.

• The type is unclear. "Dementia" is a description, not a cause. Alzheimer's, Lewy body, frontotemporal and vascular dementia are treated differently. People with Lewy body dementia can have severe reactions to antipsychotic drugs, and the newer anti-amyloid drugs are only for Alzheimer's.
• Your main problem is not memory. Trouble with vision and judging distance, finding words, behavior and judgment, or movement can point to less common forms that are easier to miss.
• You are under 65. A 2013 study in Psychological Medicine found that people with young-onset dementia waited about 4.4 years from first symptoms to diagnosis, compared with 2.8 years for people with later onset. Frontotemporal dementia had the longest delays, often because early changes in behavior get mistaken for depression, stress or a midlife crisis.
• It came on fast. A decline over weeks or months, rather than years, needs a careful look for other causes.
• The basic workup was skipped. No blood tests, no brain scan, no review of your medications or mood.

Could something else be causing my symptoms?

Sometimes, and the checks are routine. Be realistic about the odds, though: true reversal is uncommon.

Conditions that can cause or worsen memory and thinking problems include vitamin B12 deficiency, thyroid disease, depression, sleep apnea, medication side effects, hearing loss, heavy alcohol use and normal pressure hydrocephalus.

A 2003 meta-analysis in the Archives of Internal Medicine found that about 9% of people being evaluated for dementia had a potentially reversible cause, but only about 0.6% actually got better with treatment. That gap matters. It means the workup is worth doing, and it also means a second opinion is more likely to sharpen your diagnosis than to make it disappear. Even when the dementia remains, treating a contributing problem such as depression, sleep apnea or a medication side effect can make daily life noticeably better.

Who should I see for a second opinion?

Ideally a specialist who focuses on memory and thinking disorders, at a center that can do biomarker testing.

• A behavioral neurologist or memory specialist, often found at academic medical centers.
• An NIA-funded Alzheimer's Disease Research Center, if one is near you. Many see patients and run research studies.
• A geriatric psychiatrist, if mood or behavior changes are a big part of the picture.

Check with your insurance about referrals and coverage before you book, and ask whether your plan needs a referral from your doctor.

What should I bring?

Your records, your questions, and someone who knows you well. The second doctor should not have to start from nothing.

• Copies of your scans on a disc or through an image-sharing service, not only the written reports.
• Results of any memory testing, including the full neuropsychological report if you had one.
• Your blood work and medication list, including over-the-counter drugs and supplements.
• A short timeline: when you or others first noticed changes, and how they have progressed.
• Your questions written down. What type of dementia do you think this is? How sure are you? Would a biomarker test change anything? Is anything here treatable?
• Someone who sees you often, who can describe changes you may not notice yourself.

If the second opinion agrees with the first, that has value too. Some people find that hearing the same answer twice, from two careful doctors, is what finally let them stop questioning it and start planning.