Sleep disorders in the elderly — more than just insomnia

This article is for educational purposes only and does not constitute medical, legal, or financial advice. Every family situation is different, and you should consult with appropriate professionals about your specific circumstances.

Your father came home from the neurologist with a diagnosis of early Alzheimer's disease. The doctor spent maybe fifteen minutes with him. They did some cognitive testing, looked at an MRI, and said the diagnosis was probable Alzheimer's. You're supposed to go home and accept it, mourn what's coming, maybe start researching memory care facilities. But something doesn't feel right to you. His forgetfulness is recent. It's not matching the pattern you read about. He's still entirely himself in ways that don't fit the story the doctor told.

So you start researching. You wonder if you should ask for a second opinion. You wonder if you're in denial, refusing to accept the diagnosis because you don't want it to be true. You wonder if you're wasting time pushing back against a diagnosis from a specialist when you should just be accepting it and making plans.

The uncomfortable truth is that dementia is diagnosed wrong all the time. Not because doctors are incompetent or careless, though sometimes they might be. Mostly because the human brain is complicated, and dementia mimics—conditions that look like dementia but aren't—are more common than many people realize. There are times when the second look changes everything. And there are times when the diagnosis is wrong and a different treatment might actually help, might actually reverse what's happening.

The Misdiagnosis Problem

Dementia, particularly Alzheimer's disease, is diagnosed by taking a clinical history, doing cognitive testing, and looking at brain imaging. It's not like cancer, where a biopsy confirms the diagnosis under a microscope. It's not like diabetes, where a blood test gives you a definitive answer. The diagnosis of Alzheimer's is actually just probable Alzheimer's. You can't know for sure until the person dies and you examine their brain tissue. So every Alzheimer's diagnosis comes with inherent uncertainty.

This uncertainty can work two ways. Sometimes it means people with dementia symptoms are diagnosed correctly despite the imperfect process. Sometimes it means people with dementia symptoms are diagnosed as having dementia when they don't actually have it. The research suggests that somewhere between 10 and 30 percent of people diagnosed with dementia during life don't actually have dementia when their brains are examined after death. They had something else. Something different. Something that might have been treated differently if the diagnosis had been right.

Why does this happen? Partly because dementia symptoms can look like lots of other things. Partly because cognitive testing isn't perfectly accurate. Partly because doctors can be rushed and don't have time to do a thorough workup. Partly because once one doctor makes a diagnosis, the next doctor might not question it—they just accept it as done and move forward. Partly because the person doing the diagnosis might not be looking very hard for other explanations. If someone comes in with memory loss and confusion, it's easy to think dementia and stop looking. It's harder to keep investigating to see if something else is going on.

The tests used to diagnose dementia are useful, but they're not perfect. A cognitive test might show that someone is forgetting things or struggling with reasoning. But someone can struggle with a cognitive test for lots of reasons. Depression can affect cognition and look similar to dementia. Anxiety can. Stress can. Untreated sleep apnea can affect cognition. Brain imaging shows structure and function, but imaging can show changes that aren't actually causing problems, or it can look normal even when something is wrong.

The most important fact for you to know is this: a dementia diagnosis is not a death sentence that should never be questioned. If something doesn't feel right, if the diagnosis doesn't match what you're seeing, if the treatment isn't working the way you'd expect, if the progression doesn't follow the pattern you read about,those are all legitimate reasons to ask for another opinion. You're not being difficult or in denial. You're being a careful observer of your parent's life, and you're asking a reasonable question.

Common Mimics

There are specific conditions that get misdiagnosed as dementia often enough that they have a name: dementia mimics. Knowing about them doesn't mean you'll definitely recognize one in your parent. But it means you'll know what to ask the doctor about if you're concerned.

Thyroid disease is one of the most common. An underactive thyroid,hypothyroidism,slows down the whole body, including the brain. People with hypothyroidism can be confused, forgetful, slow to think, depressed. They can look like someone with early dementia. But thyroid function is easy to test, and if hypothyroidism is the problem, treating it can improve cognition dramatically. Some of that improvement happens quickly, within weeks. If your parent was diagnosed with dementia and no one checked their thyroid, that's a test worth pursuing.

Vitamin B12 deficiency is similar. Severe B12 deficiency causes neurological problems that can look like dementia. Your parent might have trouble with memory, confusion, personality changes, and cognitive decline. Unlike some deficiencies, B12 deficiency is also easy to test for with a blood test. And unlike some conditions, correcting it can actually reverse the damage to the brain, at least if you catch it early enough. If your parent was diagnosed with dementia and no one checked their B12 level, ask about it.

Depression is something that doctors sometimes remember to screen for and sometimes don't. Depression in older adults can look a lot like dementia. Your parent might be withdrawn, seem confused, lose interest in things, struggle with memory. They might not complain about sadness or despair; they might just seem foggy and confused and slow. The standard name for this presentation is pseudodementia, or depression mimicking dementia. When depression is treated, the cognitive symptoms often improve. Getting the diagnosis right means the difference between your parent getting antidepressants and therapy versus being told they have an untreatable degenerative disease.

Normal pressure hydrocephalus is rarer than the others, but it's important to know about because it's treatable and it's sometimes missed. In normal pressure hydrocephalus, fluid builds up in the ventricles of the brain, causing symptoms that look like dementia. Your parent might have trouble with walking, urinary incontinence, and cognitive decline. It can actually be reversed with surgery. But if the diagnosis is missed and your parent is told they have Alzheimer's, they'll never get the treatment that could help.

There are other conditions too. Lewy body dementia is sometimes misdiagnosed as Alzheimer's, which matters because the treatment is different and some medications that help Alzheimer's make Lewy body worse. Frontotemporal dementia is sometimes missed because it affects personality and behavior before it affects memory, and it doesn't look like the dementia people expect. Parkinson's disease and the related condition Parkinson's dementia can look like other types of dementia. Chronic subdural hematoma, where there's bleeding in the brain from a fall the person might not even remember, can cause dementia-like symptoms and can actually be treated. Medication side effects can cause confusion and cognitive decline that resolves when the medication is stopped.

Even when dementia is the right diagnosis, the type matters. Alzheimer's, vascular dementia, Lewy body dementia, frontotemporal dementia,these are all different diseases with different progressions and different treatments. Getting the type right means your parent might get a medication that's more likely to help, and you'll have more accurate information about what to expect.

When to Suspect It's Wrong

You don't need to be a doctor to wonder if something doesn't add up. There are patterns that should make you pause and ask for more evaluation.

If your parent was diagnosed with dementia and the medication they were given for it isn't helping, that's a reasonable reason to question the diagnosis. Some medications for Alzheimer's show modest benefit even in people who truly have Alzheimer's. But if your parent is taking a memory medication and they're not improving at all, and they haven't improved at all over months,not just getting worse slower, but not improving,then maybe the diagnosis is wrong. Maybe they don't have Alzheimer's. Maybe they have something else that responds to different treatment.

If the progression of your parent's symptoms doesn't match what you've read about their diagnosed condition, that's worth mentioning to their doctor. If your parent has supposedly early Alzheimer's but their memory is the only thing affected and everything else about them is normal, that's worth questioning. If your parent has supposedly Alzheimer's but they're walking strangely and having balance problems and that's the bigger problem than memory, that might be a different diagnosis like Lewy body or normal pressure hydrocephalus. If your parent has supposedly dementia but personality changes are the main thing you're noticing, that might be frontotemporal. If your parent has supposedly dementia but the main problem is depression and apathy, that might be depression and not dementia at all.

Something doesn't add up in your gut. You've read about what dementia looks like, and your parent doesn't quite fit. Or you've talked to other people whose parents have dementia, and your parent's experience feels different. You're not sure if this is denial or intuition, but you know something's off. That feeling is worth trusting. Your parent is your parent. You probably know them better than the doctor does. You're noticing something real.

The other reason to question a diagnosis is time. If your parent was diagnosed recently, quickly, without extensive testing, after a brief appointment,that's worth questioning. A thorough dementia workup takes time. It includes cognitive testing, medical history, physical examination, blood tests, brain imaging. It includes looking for other explanations. It includes follow-up to see if the person progresses the way you'd expect. A diagnosis made in fifteen minutes during a single appointment, without that thoroughness, is less reliable than a diagnosis made carefully over time.

How to Advocate

If you think the diagnosis might be wrong, what do you actually do about it?

Start by writing down what you've observed. What specific changes have you noticed in your parent? When did they start? What's the progression been? This matters because it helps you describe what's happening clearly to a doctor. Not "my parent is confused" but "my parent forgot my name twice in a month, and then remembered it again" or "my parent seems depressed and slow to respond, but their memory seems okay when we talk about the past" or "my parent is forgetful about recent things but was just as forgetful about recent things when I was a kid, and I don't think this is new."

Ask the doctor who made the diagnosis what tests were done. If the answer is "just cognitive testing and an MRI," ask what blood tests were run. Ask specifically: was thyroid tested, was B12 tested, was depression screened for, was this person evaluated for other causes of cognitive change? If these things weren't done, that's a reason to ask for them.

Request a second opinion. You don't need to frame it as doubting the first diagnosis necessarily. You can just say that you'd like another neurologist to review the case and confirm the diagnosis. Most good doctors aren't offended by this. They understand that second opinions are reasonable and that families need to feel confident in the diagnosis.

Look for a neurologist who specializes in cognitive disorders or dementia. Not all neurologists have the same expertise. Some focus on movement disorders, or seizures, or other things. A neurologist who specifically focuses on dementia is more likely to have thought carefully about diagnosis and to have considered alternative explanations.

Ask for a comprehensive evaluation if the first evaluation wasn't comprehensive. This means cognitive testing, blood work, brain imaging, medical history, physical examination. It means being asked detailed questions about the progression of symptoms, family history, medications, and other medical conditions. It takes more time than a brief appointment, but a more thorough evaluation is more reliable.

If you still have concerns after a second opinion, you can ask for further specialist evaluation. Some academic medical centers have memory disorder clinics that specialize in this kind of diagnostic complexity. They take the time and have the expertise to sort out confusing cases.

Bring someone with you to appointments if possible. An extra set of ears helps. You hear things differently when you're stressed and scared. It also makes the doctor take you more seriously sometimes, unfairly but true. If you can't be there in person, ask if you can be on the phone while your parent is at the appointment.

Be persistent if you really think something is wrong. Doctors are busy and they might not be as thorough as you'd like. You asking again, requesting specific tests, asking for explanation if tests weren't done,this isn't being a difficult patient, this is advocating for your parent. The stakes are high. You're allowed to keep asking until you're satisfied.

The Relief of Being Right

Sometimes the second look changes everything. Your parent gets re-evaluated. Different tests are done. A different diagnosis is made. And suddenly there's a treatment that might help, or there's an explanation that makes sense, or there's hope where there wasn't before.

Your father might get treated for thyroid disease and his confusion clears. Your mother might get evaluated for depression and prescribed an antidepressant and become herself again. Your parent might get vitamin B12 injections and get better. Your parent might get diagnosed with normal pressure hydrocephalus and get surgery and improve. These things happen. Not always, not for everyone. But they happen often enough that it's worth looking.

Even if the second diagnosis is the same as the first diagnosis, even if the tests all come back the same way and the doctor confirms that yes, it really is Alzheimer's disease,at least you know. You've done your due diligence. You've made sure there's not something treatable being missed. You can move forward with the real diagnosis without the nagging feeling that you didn't check hard enough.

And you've learned something about your parent's medical care. You've learned what kinds of tests need to be done when. You've learned how to ask questions. You've learned how to advocate for your parent with doctors. This matters now and it will matter later as your parent's health gets more complicated and the stakes get higher.

The other people to tell you that you're wrong to question the diagnosis? They don't have to live with the consequences of the diagnosis being wrong. You do. If something doesn't feel right, you're allowed to ask for more information. You're allowed to ask for a second opinion. You're allowed to keep asking until you're satisfied. Your parent is depending on you to take this seriously. Taking it seriously sometimes means asking the hard questions about whether the diagnosis is right in the first place.

How To Help Your Elders is an educational resource. We do not provide medical, legal, or financial advice. The information in this article is general in nature and may not apply to your specific situation. If you are concerned about a loved one's cognitive health or safety, consult with their healthcare provider or contact your local Area Agency on Aging for guidance and support.