Top 5 Misconceptions About Dementia

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In this episode of Ask Dr.

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Mia, I am going to share with you the top 5 misconceptions and I will list the misconceptions here.

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One is thinking that dementia is the same thing as Alzheimer's disease.

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Two is thinking that dementia is diagnosed by one test or one scan.

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Number three is thinking that There is no point in diagnosing dementia because we cannot do anything about it.

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Number four, misconception is thinking that one process going on in the brain is driving the symptom of dementia when in fact multiple causes is the norm, not the exception.

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And then fifth, finally, is the misconception that Medicare will pay for dementia care at home and I will talk to talk to you all about a new program called guide where Medicare is starting to pay for some care at home.

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Welcome back to Ask Dr.

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Mia.

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I am bringing you a solo episode today, going back to the fundamentals about dementia, Alzheimer's disease.

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When I first started this podcast back in 2022, I did some initial basics in terms of conversations and topics that I felt I was repeating over and over in my memory clinic when I see patients and families coming in.

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These top five misconceptions that I will address today are the most common misconceptions that I hear, both from folks who are new to memory loss.

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and dementia care, as well as from some of the medical community at large.

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So let's get right started.

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The top question and the top misconception is confusing dementia with Alzheimer's.

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Now, sometimes people ask me, what is the difference?

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And it is challenging when the word dementia and the word Alzheimer's are oftentimes used interchangeably, but they are not the same thing.

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Dementia means that someone has a brain disease that is progressive, meaning it gets worse over time, that is not currently reversible and is causing significant changes in someone's daily life to the point that they're having challenges being an independent adult.

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Early changes in daily function include harder tasks such as driving, managing medications, managing finances, cooking complicated meals and recipes.

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Those things we may think is normal as we get older to lose those functions, but that is actually not normal.

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Alzheimer's is one type of dementia.

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Dementia describes the symptom of what someone is having and how much it is affecting their daily life.

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While the cause of dementia may be Alzheimer's disease, but it may also be other types of dementia, as well as other potential causes of memory changes that are not considered a neurodegenerative disease or a disease that destroys brain cells and changes how the brain function over time.

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The second most common misconception is that people oftentimes think there is one definitive test or one definitive scan that will help someone diagnose dementia.

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It is a diagnosis that is kind of like putting together a puzzle.

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You need multiple pieces of information to put that puzzle together.

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And one part is that there has to be significant memory changes that is not normal for age.

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And these could be symptoms like getting lost in familiar environments, forgetting people who you're familiar with in terms of their names or how you're related to them, as well as Some of the more complicated tasks such as say an engineer who has always been someone who can figure out technology, all of a sudden really having difficulty managing a relatively simple type of technology that they in the past would have been able to deal with easily.

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Having a change.

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compared to their baseline is important.

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Some people have learning disability or other medical conditions going on, or just, you know, we're all different and have different strength when it comes to learning and memory.

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Some people's memory may be naturally really good, and others may have always needed post-it notes and paper to remember.

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what they need to do.

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knowing that there is objective and oftentimes the person who has the memory loss notices notable memory changes, as well as a functional change in someone's daily life that is limiting their ability to be independent after ruling out potentially reversible causes.

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Now, some of the more common reasons why we need to make sure things that could be changed are changed in order to see if someone's memory improves once those changes are made.

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For example, many medications, including over-the-counter meds like Benadryl or Tylenol PM or any sort of over-the-counter sleep aid, unisum, all of those medications can actually deplete a chemical we all have in our brain that helps us be alert and focused and can pay attention and remember.

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Other times it's untreated sleep apnea in the sense that we're not getting enough oxygen in our brains overnight and sleep apnea is not only related to memory loss as well as fatigue the next day, but also affects our heart health and causes other conditions that are related to our heart as well as our brain.

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Another common reason why people may look like they have memory loss is untreated or undiagnosed hearing loss.

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If you cannot hear, then information never gets stored in your brain in the first place.

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And so it's hard to know at a later point what was communicated.

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And this is also very common.

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So as we get older, hearing loss is tremendously common, especially in higher frequencies, which is also why sometimes women's voices are harder to hear compared to men's voices.

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I like to joke that wives always say that their husbands have selective memory, especially as they get older.

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And that might actually have to do with the common hearing loss with age where high frequency voices or higher pitch voices are harder to hear.

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So misconception number two is that there's no one single test like an MRI or a paper or pencil memory test that diagnoses someone with dementia, just like there is no single biomarker test, whether that's blood work or more sophisticated imaging that definitely says that someone does or does not have dementia because you have to have noticeable abnormal memory change plus functional loss that is different from your baseline and excluding potentially reversible causes.

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Now sometimes this gets complicated because multiple things are happening at the same time.

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You could have hearing loss and memory problems.

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You can have depression and memory loss.

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So teasing those out is part of what a memory specialist or a primary care doctor may be able to do clinically.

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The third misconception, which sometimes we actually hear more from the older generation, as well as some medical professionals who are not as up to date in terms of dementia care and memory cognitive health.

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And this is a bit of a fatalistic opinion that there is no point in testing or diagnosing dementia.

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because quote unquote, we can't do anything about it.

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I would say I would push back on that we cannot do anything about it even if this was 15 years ago.

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While we may not have no very great medications, a lot of the reasons why a diagnosis is important actually doesn't have to do with medicine in my opinion.

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our memory and our thinking and our ability to manage our daily activities not only is important in terms of our independence, but also affects how we manage all of the other chronic medical conditions.

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So if you have undiagnosed memory problems, it's also very likely that you will forget to take your medicines or take them inconsistently.

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and have blood pressure that fluctuate to really high or really low or have poorly controlled diabetes because you forget that you have eaten or you're supposed to take the medicine when you have not.

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So all kinds of chronic self-management are affected even though dementia or memory loss is just one of the many chronic conditions that primary care doctors have to deal with.

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I would say it's kind of a structural support without that piece of confirmed good memory and self-management.

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It really affects the whole thing, not to mention all of the legal and caregiving ramifications because dementia does affect the whole family, as oftentimes family members and friends get pulled in to help the person who cannot remember or have trouble with their thinking and reasoning to do the things that they used to do.

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I having a diagnosis is oftentimes very helpful in terms of both applying for community resources, like say adult day centers, Um, as well as for power of attorney, long-term care insurance, disability, all of those things really require a diagnosis, even if there is no medication to treat it.

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In the past two or three years, we have really entered a new era in terms of Alzheimer's disease specific treatment.

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And I.

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want to be careful and say that's Alzheimer's dementia, Alzheimer's disease specifically, not necessarily dementia in general, because while Alzheimer's is the most common type of dementia, it's not the only type.

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And these past two years have really brought the anti-amyloid treatments to market.

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Now, how the very first drug came about to the market was not very effective and there were some controversies surrounding the FDA approval process.

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Since then, there really has been two main drugs, Licanumab or Lekimbi and Donanumab, which is Consula.

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I talked a little bit about Licanumab in previous episodes when it first came out.

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as well as an update.

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And I plan on talking about the Nanomab and Licanomab again in a future episode because this field has really changed very rapidly just in the past year.

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So there is a point in diagnosing earlier.

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One, we can direct people to what we think is a disease modifying drug like Licanomab or Donatomab where we are treating one of the causes of Alzheimer's disease.

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I don't think amyloid plaques is the only reason why people have Alzheimer's, but it is one of the causes of Alzheimer's disease.

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And that actually leads to the fourth most common misconception, which is the presumption that if you have one type of dementia, then that is the one disease that is driving the process.

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But we know through research and years of unsuccessful clinical trials that what may look similar on the outside in terms of people's symptoms may actually be very different on the inside when you look at what's going on in people's brains.

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There are a number of different proteins and processes that have changed in the brain in terms of plaques like amyloid, tangles like tau, as well as other abnormalities like Lewy body, alpha-synuclein, as well as even other types of dementias that currently don't have a clear biomarker.

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I would say that Having more than one cause of dementia is actually probably the norm, not the exception.

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And that might be surprising even for primary care doctors and people who are not as familiar with cognitive and memory care in that we have for a long time thought that if you had say vascular dementia where you have had multiple strokes that we think is the cause of your memory problems, then you couldn't possibly also have Alzheimer's dementia.

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But in fact, what we now know is that a lot of what we used to call Alzheimer's disease or Alzheimer's dementia is actually probably a mix of amyloid and tau generated, the generation of neurons.

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as well as small vessel disease that we see with age, as well as with vascular changes in the brain.

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I like to say that just as we look at the health of the small blood vessels that surround and pump the heart, we also look at the small blood vessels in the brain, and that is routinely under-reported.

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in radiology reads where the main read, the conclusion may say that there is nothing abnormal.

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But if you go into the body of the report, it will say they actually have had very small lacunes or small strokes in a deep part of the brain.

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And oftentimes these are have not had any symptoms that are typical.

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of strokes, of sudden weakness, trouble speaking.

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They can be symptomatic, but sometimes people are surprised to find out that they have had an old stroke and never knew about it until an MRI or sometimes a head CT is done.

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An MRI is a more sensitive test, like a digital picture of the brain, while a CT scan is like a Polaroid picture of the brain.

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So that's the fourth misconception that multiple causes of dementia is the norm, not the exception.

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I do wanna go back and add one clarifying point between the word disease and the word dementia in the sense that in any disease, whether it's Alzheimer's disease or Lewy body disease, there is a buildup of changes in the brain probably for decades before people start having symptoms.

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And when people start having symptoms, if they're mild enough where there is abnormal memory changes that's not due to aging, but they're still able to maintain their normal functioning.

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The disease still exists and is progressing, but the person has not yet hit the dementia.

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arbitrary cutoff, which is also a subtle distinction between what is a decline compared to your normal baseline in terms of activities that keep you independent, such as driving, managing finances, managing complicated medication regimens.

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Those things can certainly change over time as we get older.

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but not to such a significant degree that people are not able to be independent.

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So that change in independence is really what defines dementia compared to the earlier stage of what's called mild cognitive impairment.

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Just like the word dementia is an umbrella term, the word mild cognitive impairment is also an umbrella term.

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It describes the global stage or the global symptoms of where people are, but does not tell me what is the underlying cause.

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And one of the underlying causes could be Alzheimer's disease, which is why in the lay literature and news, sometimes there is so much confusion.

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Is it Alzheimer's or is it dementia?

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But actually the better question is, are we talking about Alzheimer's disease that probably you can see changes in the brain happening years before symptoms start.

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And if we catch it early enough, it's not called dementia.

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Or are we talking about the symptom of having a significant functional change due to memory problem that is not due to a reversible cause?

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And last but not least, in terms of the fifth most common misconception is probably the misconception of thinking that Medicare should and will pay for care at home.

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This is oftentimes a surprise to the families who are taking care of a loved one with dementia where they need more help and support, but come to find out that Medicare will not pay for hiring someone in the home to sit with the person, engage them with activities, do like household chores, remind them to take their medicine.

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All of these are highly skilled activities that it takes a special person to do, but Medicare does not consider them a quote unquote skilled service.

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where you don't necessarily need someone with a particular licensure, such as nursing, physical therapy, occupational therapy to do.

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so Medicare typically does not cover for this type of service unless we are in a uh new Medicare innovation project called Guiding an Improved Dementia Experience or the GUIDE program.

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Oftentimes the direct care that is brought into the home or the care that is provided in adult day center or certainly in memory care is out of pocket unless someone is poor enough to qualify for Medicaid.

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Just a quick note about the guide program.

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This is something that I have been working very hard on over the past really two years.

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This is a new alternative way of pay for dementia care to really support not only the person living with dementia in the community, but also their unpaid family caregivers who are supporting them and are currently having trouble navigating the healthcare system and maybe listening to this podcast.

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So the guide program was launched by the Medicare Innovation Center back in 2023, where programs who were interested in doing this had to apply and Medicare reviewed those applications and selected and approved about 390 programs around the country.

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They divided the programs into what's called established programs and new programs.

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established programs like the one that I helped launch at Wake Forest Baptist Medical Center in Winston-Salem, North Carolina, had to show some evidence that they have been doing the type of multidisciplinary comprehensive dementia care that supports both the person living with the disease and their families in order to be approved as an established program.

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the majority of guide programs are considered new programs that have launched this summer in July of 2025.

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What is innovative about guide is that instead of paying a fee for every visit that you go see the doctor for, this is a way of paying a lump sum per month per Medicare beneficiary.

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who have traditional Medicare that are eligible for the program.

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It is still considered a pilot program for the Medicare Innovation Center because it is not widely available anywhere in the country.

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It is only available among the 300 or so programs that are offering and have been approved to deliver guide.

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The biggest barrier, I think, in enrolling folks have been about insurance.

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Most people do not know that there is a difference between what's called traditional Medicare and Medicare Advantage.

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So traditional Medicare is the Medicare that you get from the government directly, and usually comes in Medicare Part A that covers hospital-based charges like a hospitalization, as well as Medicare Part B.

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that covers outpatient or doctors visits and home health, home physical therapy.

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There is a Medicare Part D for drug coverage.

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And a lot of times in order to get the Medicare directly from the government, people have to select multiple, you know, of the components of Medicare, Medicare A, B and D.

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What Medicare Advantage, uh is also considered is the C part of Medicare, just to make it confusing.

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These are companies like Aetna, Humana, UnitedHealthcare, Blue Cross Blue Shield, any sort of non-government entity that basically packages Medicare different components into one plan to sell to the beneficiary.

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or the person who's eligible for Medicare, usually at age 65.

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And these Medicare Advantage programs usually do a lot more marketing than the government.

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And they may say that it is advantageous to pay less premiums or less money per month for Medicare Advantage compared to paying for the traditional Medicare.

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But the downside is that Medicare Advantage programs can limit and do limit where you can get care and where you cannot.

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And the costs may be particularly noticeable in terms of home care and post-acute care or care that is done in rehab facilities and other services that are needed after hospitalization.

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Before I go further in terms of talking about Medicare, please see my episode from about a month ago where I talked about changes to Medicare and Medicaid and went into more detail about what those programs mean.

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For the purposes of this misconception, the reason why I brought in Guide is that it is the first time that Medicare is paying for respite care in the home to provide a break for caregivers.

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And this is something that all guide programs around the country have to help coordinate with home care companies, adult day programs, or even facility-based care to be able to offer to families who are caring for someone with dementia and allow them to take a break.

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It's not a whole lot of money.

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It has an annual cap of around $2,500 and you can use it or lose it as it re-annules every July.

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So this really translates to, you know, about 80 hours of in-home care, just depending on the market and the per hour cost in your region.

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There are nuances in terms of what Medicare will pay for.

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And it turns into about 20 days or so within an adult day center.

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If we presume that the average cost to go to an adult day averages about $100 a day, again, depending on the region and the cost of living in that region.

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So that is the final misconception of to round out the top five.

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that Medicare does not pay for care at home, except within the exception of the guide program as it currently stands in September of 2025, or almost October of 2025.

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So once again, the top five misconceptions are number one, confusing dementia with Alzheimer's disease and thinking that they are the same.

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Number two, thinking that we can diagnose dementia by one test, whether that is a paper pencil test or scan or blood work, there is no single test.

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It's really a combination of memory change that is not normal due to age plus significant changes in someone's independence after you exclude potentially reversible causes.

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Number three, misconception is that there's no point in diagnosing dementia because we cannot do anything about it.

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This is really not uh accurate anymore, both in terms of new therapies, as well as the broader scope of what we can do from a legal, caregiving, insurance, chronic disease management.

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management perspective.

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All of these are great reasons to diagnose earlier and allow the person who is having dementia choices and planning out how and what type of decisions they want to make.

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Number four, misconception is that thinking one disease is like Alzheimer's disease is the main cause of someone's dementia.

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When reality is that multiple disease pathologies or multiple different processes may be happening in the brain, with the most common being the combination of Alzheimer's disease and vascular disease co-occurring together, especially as we get older.

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And then finally, the top fifth misconception is that thinking Medicare will pay for in-home care in the home, where for the most part, that is still a misconception unless you are someone with traditional Medicare and have a dementia diagnosis who live within the area of an existing guide program.

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And I will link to the Medicare website where you can look and see where the closest guide programs may be to you.

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and as well as contact information if you are interested in getting your loved one into a guide program.

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Obviously with the caveat that you have to have traditional Medicare, which is obtained directly from the government.

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Thank you all for listening.

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If you have enjoyed this episode, please leave me a review.

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Let me know what you took away, who you might be caring for.

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or even topics and questions for future episodes.

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Thank you and see you next time.