Welcome to the first episode of Psyched for Mental Health, the official mental health podcast of WebShrink. We will be releasing regular installments from now on. Each one will be a deep dive into a specific mental health topic with an expert in the field.
In this episode, neuropsychiatrist Dr. Alyson Maloy helps us unpack Dementia & Cognitive Decline. We go over causes and risk factors. We cover how the doctors make the diagnosis and how they treat it. You’ll also learn when you should seek an evaluation and what kind of professional to see.
Episode Transcript:
Dr. Ed Bilotti:
Hello. I’m Dr. Ed Bilotti and this is Psyched for Mental Health — empowering you with trustworthy information about modern psychiatry. This podcast is a companion to WebShrink.com – the platform for seekers and providers of mental health care. In this premiere episode, we will unpack the topic of dementia and cognitive decline.
You will learn when to be concerned, what kind of professional you should see, how the diagnosis is actually made, what are the causes, risk factors, treatments, and much more.
The Order of Time
In his 2017 book, The Order of Time, physicist Carlo Rovelli has the following to say about memory and our identity:
“An essential ingredient in the foundation of our identity is memory. We are not a collection of independent processes in successive moments. Every moment of our existence is linked by a peculiar thread to our past. Our present swarms with traces of our past. We are histories of ourselves, narratives. I am not this momentary mass of flesh, I am my thoughts, full of the traces of phrases that I am writing, I am my mother’s caresses and the serene kindness with which my father calmly guided me, I am my adolescent travels. I am what my reading has deposited in layers in my mind, I am my loves, my moments of despair, my friendships, what I’ve written, what I’ve heard, the faces engraved on my memory. If all this disappeared, would I still exist?”
My guest is Dr. Alison Malloy. Dr. Malloy is triple board certified in neurology, psychiatry, and integrative-holistic medicine. She’s the founder of Portland Cognitive and Behavioral Neurology in Portland, Maine. After earning her undergraduate degree from Columbia University, and her MD from the University of Vermont College Of Medicine, Dr. Malloy completed a double residency in Psychiatry and Neurology at New York University Langone Medical Center and then went on to complete a one-year fellowship in Autonomics at the Dysautonomia Center of NYU. She’s a member of the American Neuropsychiatric Association and the Maine Association of Psychiatric Physicians, a fellow of the American Psychiatric Association and an active board member of Physicians for Patient Protection, a patient advocacy group fighting to ensure patients have access to physicians, and to advocate for truth and transparency in healthcare credentials.
So, let’s get started. Dr. Malloy, it’s a pleasure to have you, thank you for being here.
Dr. Alyson Maloy:
Thank you.
Dr. Ed Bilotti:
Memory problems. I can’t think of a word. I can’t think of someone’s name, I don’t remember where I left my car keys. This is so common that almost all of us experience this from time to time, but people worry. Is this a sign of something? I think people wonder, when should I seek an evaluation by a professional?
Dr. Alyson Maloy:
I think people should seek an evaluation as soon as they’re concerned, especially because there are reversible causes of memory impairment. It is important to just be checked out by your physician. If you really are noticing a problem, there’s no harm in speaking with your physician
Dr. Ed Bilotti:
What about the situation where people don’t always see the same physician each time they go back, they may see a different doctor or a different clinician, and they don’t have the same physician that is their physician. What happens then?
Dr. Alyson Maloy:
In the modern healthcare arena, the doctor-patient relationship has really deteriorated as a result of corporate forces in medicine. So, a lot of people don’t get to see their own physician every time they go to the doctor’s, and they don’t have a relationship with the same physician, like happened in the old days where you had the same family medicine or internal medicine physician for your whole life.
That lack of intimate relationship with a physician over time really does reduce the quality of medical care. So that would complicate going in to see a regular physician who doesn’t know you very well. They may not be able to pick up on subtle changes. But with that said, there are some very easy questions that they can ask you or labs that they can do, even imaging, that can at least either reassure you and, or get a baseline to follow this concern over time.
I also say physician because there’s a lot of healthcare professionals in the arena now, and a physician is someone who has an MD or a DO after their name. This is someone who is a medical doctor and who has graduated from medical school and completed an intensive residency program. And I think in the field of behavioral neurology and neuropsychiatry, it’s really important to seek care from someone with a medical degree, because a lot of the problems can be subtle.
Dr. Ed Bilotti:
So true about the doctor-patient relationship, and historically not just individuals, but entire families would see the same doctor for years throughout their lives. And this doctor would have a relationship and they’d get to know them over time. So that doctor might more readily recognize something that seems like a change from before, as opposed to something that’s just kind of been there all along. But the person is just beginning to notice something and getting anxious.
What you say about types of providers is especially true in mental health, isn’t it? Because in mental health, you have a whole array of people who can call themselves professionals and practice independently. You have psychiatrists, psychologists, social workers, licensed professional counselors, and so on. So I think what you’re saying is when it comes to something like, neurocognitive problems, it’s best for a person to seek an evaluation by someone who’s medically trained.
Dr. Alyson Maloy:
Psychiatry, and in this case, neuropsychiatry, is so different because you really have to factor in all of these domains of what makes a person, a person and there are so many medical disorders that can affect your brain and present themselves as a psychiatric symptom. But the cause is medical. You know, I had one patient referred to me who, after a neuropsychology report that diagnosed him with attention-deficit disorder, and I was working as an outpatient neurologist at the time. And lo and behold, he had an enormous meningioma compressing his entire frontal lobe.
Dr. Ed Bilotti:
A brain tumor?
Dr. Alyson Maloy:
Yes, it’s a benign brain tumor.
Dr. Ed Bilotti:
Wow.
Dr. Alyson Maloy:
So, rather than Ritalin he needed neurosurgery. So, these are the things that can just get confused and lost in, “mental health.”
Dr. Ed Bilotti:
Wow. Sure.
When you were talking about where you’re paying the same thing, but you’re getting less, you know, it’s kind of like the shrinking Twinkies over the years, you know, they get smaller and smaller, but you’re paying the same <laughs>.
Dr. Alyson Maloy:
Actually, I just got Twinkies like a week ago after my son’s first COVID shot. He wanted a treat. I’m like, okay, you can have a treat. And then my treat was Twinkies <laughs>.
Dr. Ed Bilotti:
Ha that’s great.
Continuing on with this question of cognitive decline. Most people are familiar with the terms Alzheimer’s disease and dementia, but I find, uh, a lot of people, even in my practice get confused about what is the difference? Are they the same thing or are they two different terms for the same thing? And then there’s mild cognitive impairment, which we hear a lot about. Can you help us understand that and separate those things?
Dr. Alyson Maloy:
Sure. Dementia is a large category that is basically an umbrella term to talk about cognitive deterioration, to the point that it affects someone’s daily activities.
And there are many different causes of dementia. The most common is dementia of the Alzheimer’s type. So when you hear someone use the term Alzheimer’s disease or Alzheimer’s, that is one type under the umbrella of dementia. Um, other forms of dementia include Diffuse Lewy Body Disease, Corticobasal degeneration, Parkinson’s Disease Dementia.
There’s a whole big list. Neurodegenerative dementias are the type of where the brain is deteriorating over time. And for myself as a clinician, I like to think about the neurodegenerative dementia in four categories based on the type of protein that it has. There’s other causes of dementia that do not involve neuro-degeneration such as a traumatic brain injury or a nutritional problem, but in the class of neurodegenerative dementia of which Alzheimer’s is one, I like to separate them out into the four proteins. One is amyloid. Another is Tao. The third is alpha-synuclein. And then the fourth category, I leave to prion diseases. That includes what we all know of as mad cow disease.
Dr. Ed Bilotti:
Is my primary care doctor or provider, as the case may be, going to be able to distinguish these? Do I need to see a specialist?
Dr. Alyson Maloy:
I don’t think that first stop should be with a subspecialist. Family medicine physicians and internal medicine physicians have an extraordinary knowledge base and skill set when it comes to, uh, examining patients and interviewing patients and diagnosing dementia.
So, I would recommend going to see a primary care physician for your first evaluation. Mild cognitive impairment is a syndrome defined as cognitive decline, greater than expected for an individual’s age and education level, but just not interfering notably with activities of daily life. So, this would be a actual deficit that people experience, but it’s not preventing them from doing the things they want to do, like paying the bills or driving or remembering enough to go grocery shopping or things like that.
Dr. Ed Bilotti:
Is this the beginning of something that’s going to continue to progress? Is that an assumption that someone can make?
Dr. Alyson Maloy:
No. Most people who have mild cognitive impairment do not progress to dementia. About 40 to 50% of people who have MCI at one point in time return to cognitively normal.
Dr. Ed Bilotti:
That’s reassuring.
Dr. Alyson Maloy:
Yeah. And that also depends on your age. So, for example, if you’re 80 years old or above, about 70% of people have an MCI syndrome. And then, uh, more than half of them progress to dementia, uh, within two to three years,
Dr. Ed Bilotti:
What about causes and risk factors? Do these kinds of things run in families? Is there a way that children and grandchildren of people who’ve had dementia can predict whether they may be at risk for developing it later in life?
Dr. Alyson Maloy:
The short answer to that question is no. There’s no real way to say who’s going to get dementia and who’s not. There are some rare syndromes, for example Huntington’s disease, that can cause dementia and that’s inherited in an autosomal dominant fashion. So, if one has a parent with Huntington’s, you could go and get genetic testing to find out if you have Huntington’s before it presents clinically. However, most people actually don’t want to know. It creates an incredible emotional burden and in many ways can ruin the time that you do have without symptoms.
So, I would recommend that if anybody is looking to do any sort of, any form of genetic testing, it really needs to be done in concert with a genetic counselor or at a minimum, your primary care physician.
Alzheimer’s Dementia
In terms of Alzheimer’s, which is the most common form of dementia, there’s a limited number of patients who have inherited forms of Alzheimer’s. The vast majority are spontaneous DNA mutations.
There are a lot of environmental factors that also lead to the development of Alzheimer’s. For example, your blood sugar level, your physical activity, your diet. Uh, your educational level, even your magnesium level has been shown to be associated with the development of Alzheimer’s disease.
But the problem is on an epidemiologic population level. Uh, we can look at populations and say, okay, these people eat X, they have a lower incidence of Alzheimer’s or, you know, we can look at different factors and prove some sort of relationship and even maybe some causality. However, unfortunately, a lot of the studies have shown no matter how we manipulate those factors, it doesn’t do any good.
So, you know, a few years ago, there was a lot of literature about how important it is to exercise and how people who are older, if they exercise, they had better cognitive, um, capacities. In my recent review of the literature, although the recommendations remained the same, it appears that by the time symptoms – it just seems that we really have to have a healthy lifestyle beginning in our twenties, uh, to really impact a lot of these factors. And most 20-year-olds are not going to bother to have a healthy lifestyle for the prevention of dementia.
Dr. Ed Bilotti:
Right, most 20-year-olds are still thinking they’re invincible and they’re not thinking they need to think that far ahead.
So, although the environmental factors have been established, some anyway, you’re not always necessarily able to reverse things by changing, say your diet or your exercise level or – once the process…
Dr. Alyson Maloy:
Yeah, or prevent, yeah.
However, the literature on this is a little tricky, you know, I read one study that showed modifiable risk factors like high blood pressure, diabetes, and inactivity, if these risk factors were reduced by 10 to 15% up to half of all Alzheimer’s disease cases could be prevented.
One thing I think does not get enough attention is nutrition. There’s been a lot of conversation about how a Mediterranean diet can reduce the incidence of Alzheimer’s disease. And although I think a Mediterranean diet is a vast improvement over what most of us Americans eat, I think there’s one step up, even from that.
Nutritarian diet
And that is called a Nutritarian diet. It, um, was created by Joel Fuhrman, a family medicine physician, and world-renowned nutrition researcher, in his most recent book called Eat for Life – I think it was published in December of last year – goes through so much of the current research on the impact of how we eat on our health in general. And because Alzheimer’s disease really is an accumulation of amyloid plaques over time. Some people become symptomatic with the plaques, some people don’t. I think it’s really helpful to think in terms of what can I do to prevent that wear and tear on my brain over the years.
And what I really like about, uh, Furhman’s approach to eating is he doesn’t focus on what’s bad. He focuses on what volume of micronutrients do we need to feed this human body for it to perform at a maximum level? Our bodies are miraculous in that when we don’t give them what they need, they really can pick and choose to take care of the most basic functions first. But that means that the higher functions of cleaning, um, fixing the vasculature, et cetera, just doesn’t get.
Dr. Ed Bilotti:
So, when you say cleaning, you’re referring to the body, sort of the body’s own mechanisms for maintaining healthy vessels and healthy blood flow. Um, but that if we’re nutritionally deficient in some ways, that those are processes that might be passed up in favor of using the available energy for more essential functions. Is that what I understand you to be saying?
Dr. Alyson Maloy:
Yes.
Dr. Ed Bilotti:
What are your thoughts about things like doing crossword puzzles or these brain training apps that are touted to help possibly prevent cognitive decline by kind of exercising your brain, do those work?
Dr. Alyson Maloy:
No. None of them have been proven to work. But what is interesting is that higher education levels have been shown to prevent dementia.
And it’s thought not that they give you some biologic leg up and you don’t actually have the neurodegeneration at play, but that you have a larger cognitive reserve. So, as you lose function, you still can stay above that threshold of dementia.
Dr. Ed Bilotti:
So, the more you start with the better off you are, the more you can sort of lose and still have enough to work with.
Dr. Alyson Maloy:
Yeah. If you want to train your brain, uh, go to college, get a master’s and also staying socially active has been shown to be important and volunteer work has, uh, been shown to help maintain cognitive health. Really just staying involved in, and doing things.
Dr. Ed Bilotti:
Once a person is diagnosed with dementia or Alzheimer’s disease, are there treatments that can slow down or stop the progression?
Dr. Alyson Maloy:
There are some treatments. Historically our treatments slowed the decline, but did not, were not disease modifying. So, for example, the class of medications that is most widely used acetylcholinesterase inhibitors, um, such as donepezil, rivastigmine, galantamine. The end point in a major study was a two-month delay in nursing home placement, which doesn’t sound like much, but when you multiply it by millions of people and millions of nursing home days and, uh, therefore millions of dollars, um, and all those hours of people not with their loved ones, it can be significant.
Some patients do actually report feeling cognitively better or being able to walk a little better on the acetylcholinesterase inhibitors, but that’s not the reason for using the medication. It typically doesn’t improve people’s cognitive function,
Another mainstay of treatment for Alzheimer’s, and again, in this case, I’m talking specifically about the Alzheimer’s form of dementia, would be NMDA receptor antagonist memantine. That is an NMDA blocker, and it helps protect the brain from the excessive glutamate activity found in Alzheimer’s disease.
And then just, I think it was November of last year, aducanumab aka Aduhelm, was approved by the FDA in a very controversial ruling. Eli Lilly has just applied to the FDA for a humanized IgG1 monoclonal antibody monoclonal antibody donanemab. And both of those last two medications I mentioned are in fact disease modifying, which is different from the medications that we had up through last year
Dr. Ed Bilotti:
And by disease modifying do you mean that rather than just possibly slowing progression or delaying say admission to a nursing home that they can improve the patient’s condition or reverse the symptoms?
Dr. Alyson Maloy:
That is the hope and the promise, the Adulhelm®, one of the reasons the approval was so controversial is that there were two groups of patients. One of whom did have a benefit in the other group that didn’t, but some researchers say that the reason for that is that the dose was changed to the high dose in the middle of the study. And so those patients who didn’t have a benefit didn’t have enough time exposed to high dose, but in further review of the treatment, I will say that the side effect profile is quite risky at this point in time, a heavy load for patients to take on for a not clear clinical benefit.
The trials show that this medication did in fact, remove amyloid from the brain, which clinicians believe will then improve the patient’s symptoms of cognitive impairment. However ,we don’t know, in fact, that it will have a big clinical impact. And also, uh, there’s a high incidence of a side effect of edema or micro hemorrhage in the brain. And so, patients need to have an MRI within a year of starting the medication.
Dr. Ed Bilotti:
It sounds like it’s one of those situations where it’s a risk benefit conversation and a decision that has to be made between the doctor and the patient and the family.
Dr. Alyson Maloy:
Yeah, exactly.
Dr. Ed Bilotti:
So, let’s say that a person has gone to see their primary care physician. They’ve gone through those initial steps. They end up being referred to a specialist such as yourself. Now, how are you going to go about determining whether or not this person has dementia, Alzheimer’s, Mild cognitive impairment?
Dr. Alyson Maloy:
The first thing I do is look at what’s already been done by the primary care physician and every evaluation for dementia begins with a interview where the physician really wants to classify. When did the person last feel totally normal? When did the symptoms begin to come on? What were the symptoms? What was the pace of progression? And then we’re trained as physicians to do a review of systems to really home in on all sorts of other systems that the patient may not think to tell us about, but that may be relevant and really dig for other symptoms. So, for example, Parkinson’s disease, you have a lot of alpha-synuclein deposited in the peripheral nervous system as well. And patients can have a constipation and orthostatic hypotension, and a lot of those symptoms occur earlier. Also a lot…
Dr. Ed Bilotti:
Orthostatic hypotension. Can you explain what that is?
Dr. Alyson Maloy:
That is, uh, feeling light-headed when you change position caused by changes in blood pressure. When you go from laying down to sitting or sitting to standing and you start to feel lightheaded, or in some patients, they get a coat hanger sign where they have pain along a coat hanger distribution, or around the back of the neck and the shoulder. Let’s say, you know, comes on walking out to the mailbox to get the mail outside. You’re fine for a while. But then by the time you get to the mailbox, you have that coat hanger pain that can be a sign of low blood pressure. There’s a lot of physical signs that physicians will look for, um, to put the whole picture together.
So, after the interview, I do a physical exam. And, you know, I’m looking for medical signs as well as neurologic signs, reflexes, certain tests that, um, I’ll look for on physical exam would be speech problems called aphasias, motor memory problems. Um, those are called apraxias. Um, problems with recognizing things with your senses, which are the agnosias, and also problems with complex behavior sequencing, which is looking at executive function.
I like to say the best test of executive cognitive function is cooking a Thanksgiving dinner because you have to preheat the oven, take the eggs out, start the Turkey, and then get the potatoes going. And it’s like organizing all of these activities in space and time. And so that is really what executive function means, following a recipe.
So, I’ll do a full neurologic exam and also I will do some tests or scales of cognitive function. My favorite cognitive test is the Montreal cognitive assessment exam, the MoCA. Some people use the MMSE, the mini mental status exam. I do not find that to be sensitive enough to pick up problems.
Dr. Ed Bilotti:
And in psychiatry that’s what we were trained with, right? To do the Folstein mini mental status. But the MoCA definitely has kind of taken more of a front seat. It’s more, it goes into more depth and evaluates more different areas of functioning?
Dr. Alyson Maloy:
Definitely. And, um, interestingly researchers still use the MMSE in studies to diagnose patients and do cutoffs, but I haven’t done an MMSE in about 15 years.
So, I use the MoCA. And I also do psychiatric scales because for example, a severe depression can look like a dementia. Uh, we know that, uh, cognitive deterioration can be a side effect of depression. And when you treat the depression, cognition improves. Anxiety can also make people look disorganized and like they have a cognitive problem.
For me, neuropsychological testing is not part of my workup unless I have a big question about diagnosis and some confusion with. I know that neuropsychological testing is recommended as part of the baseline workup for someone with dementia, but it’s, especially in Maine, it’s difficult to get, it’s very expensive, and I don’t find that it changes my clinical management enough unless I have a question about what I’m actually dealing with.
And then I will put that all together and work out my differential diagnosis of what might explain this patient’s symptoms. In medical training physicians work on developing a differential diagnosis for years and years.
I am still scarred by my medical school and residency experiences of writing out V.I.T.A.M.I.N.S.. Is it vascular? Is it Idiopathic? Inflammatory? Is it traumatic? Is it metabolic? I mean, we go through every
Dr. Ed Bilotti:
V.I.T.A.M.I.N.S. is an acronym? So it’s a mnemonic for the…
Dr. Alyson Maloy:
An acronym, yes. And so, this is one of the reasons that I encourage patients to seek care with their physician, because this is what distinguishes medical training from some other training of clinicians, such as advanced nursing or physician assistants, doing a differential diagnosis, I find is very important because it is at this point in the evaluation of a patient where my differential determines everything. If I don’t think of one thing that could explain it, then I’m not going to look for it and I’m not, and I’m going to miss it if it’s there.
So, for example, Whipple’s disease is a relatively rare disease that can cause dementia. It usually presents with GI symptoms and patients usually are not diagnosed until, you know, six or eight years into the illness.
So, I do think it’s important to go to a clinician who is also going to be aware that zebras exist. Because if you’re the one with the zebra, you don’t care that it only occurs in one in 500,000.
Dr. Ed Bilotti:
If you’re the one.
Dr. Alyson Maloy:
If you’re the one.
So, to keep it simple, if I think that this person has Alzheimer’s dementia, I might be able to make the diagnosis right there, their history, their physical and their testing may be so characteristic that I am confident that this is Alzheimer’s.
However, I will still do lab tests to rule out some other things such as a B12 level, neuropsychiatrists want a B12 level to be above 400. Even though the lab says that a level of 190 or 200 is normal. Vitamin D level. I check that. It’s not required, but if someone has a vitamin D level of nine and it’s supposed to be 30, they may be very fatigued and depressed and cognitively impaired from that. So I personally check that, especially in Maine, um,
Dr. Ed Bilotti:
Because of the long, dark winters, and lower exposure to sunlight?
Dr. Alyson Maloy:
Yeah. And, um, I’ll also check a CMP comprehensive metabolic panel, a TSH, thyroid stimulating hormone RPR. You know, neurosyphilis is a rare form of dementia, but you don’t want to miss it.
Lyme. There are cases of people having cognitive problems just simply due to Lyme disease. Uh, so I want to check the. And, um, some recent literature also talks about magnesium levels, either high or low being important as a risk factor for the development of dementia. So, I’ve started checking a magnesium level.
Each clinician has their own battery of labs that they’re going to want to look at. And also that’s going to be determined by what symptoms and signs and history the patient presents with. In some patients, I will do an EEG which looks at brainwaves because if someone has a subclinical seizure disorder that can look like dementia,
Dr. Ed Bilotti:
Interesting. So, like a partial seizure, not the kind we’re used to thinking of where a person’s body is shaking. Something more subtle?
Dr. Alyson Maloy:
Yeah. A generalized tonic clonic seizure called a grand mal seizure is the big one that we all look at, but a lot of epilepsy, just the person has moments of just zoning out and then they may have what we call a post-ictal period where they’re confused.
So that’s also some questions that I include in my history. You know, do you have lost periods of time? Have you had a history of a head injury? You know, to look at the likelihood that there may be, um, undiagnosed epilepsy.
And then, you know, I may or may not order imaging at that first appointment. And that’s for a couple of reasons, first of all, CAT scan is a dose of radiation to the brain, and we know that there’s a certain number of people every year who get cancer from CAT scans.
It’s not really talked about that much in the field of radiology, but I always cringe when I see that every time someone hits the ER, they get a cat scan, and they hit the ER, you know, every month for a year, you know, that’s dangerous. Neurologists in general, want to see everybody have an MRI? Uh, not a cat scan
Dr. Ed Bilotti:
MRI doesn’t, uh, expose the… Doesn’t hit the brain with radiation?
Dr. Alyson Maloy:
Yeah. Yeah. And so, I personally don’t order CAT scans for dementia, although they are a lot less expensive. I will typically order an MRI without contrast as a first pass. But you know what? I saw a patient a couple of weeks ago, where the first image that I ordered for him was an FDG PET.
He was diagnosed as having anxiety. He was told he did not have dementia. I suspected that he did have dementia. And so, I went straight for an FDG PET and lo and behold, he had dementia Alzheimer’s type
Dr. Ed Bilotti:
Getting a diagnosis of dementia or Alzheimer’s disease has to be quite terrifying. As a neuropsychiatrist, can you give us an idea of what your first conversation with a patient and their family to deliver that news of a dementia diagnosis would go like?
Dr. Alyson Maloy:
Yeah. So, part of the conversation depends on the workup that has been done and the level of certainty of the diagnosis. In a way it’s difficult in the beginning because people want answers and often we don’t have answers. We have to watch our problem over time.
In the conversation about the diagnosis of dementia and helping patients to come to peace with this diagnosis, one thing I like to point out is that one of the gifts of Alzheimer’s disease is that it allows a person to be completely in the moment. Every spiritual practice on the planet’s goal is to get people to live in the present, to not be, you know, beating yourself up about things that happened in the past or terrified about what’s going to happen in the future.
So, when someone develops Alzheimer’s disease that’s what happens for them. They no longer project into the future and become terrified and over analyze things. They, uh, you know, forget a lot of the past and they really live in the present. So I try to help patients and their caregivers improve the experience of the moment through good food, and nature, and art, and music, and just things that make you feel.
Dr. Ed Bilotti:
That’s a very unique and interesting perspective and a way of framing this as a positive. We’re all trying to learn how to practice being in the moment, and being grounded, and mindfulness, and, um, dementia kind of forces a person to experience life in that way.
And that raises another question for me. You pointed out listening to music or enjoying good food or something that makes you feel good. One of the questions that has come up, and I’ve even experienced it firsthand in my own family, is many people will think of a person who has advanced dementia as, well, they’re basically gone, right? And they’re just a shell of a person waiting to die, so to speak. So as long as their basic needs are taken care of and they’re safe, then it doesn’t really matter whether they’re being cared for by staff at a facility who are just doing the bare minimum.
And the other side of that is, well, they are still alive, and they are still human, and they can experience emotions and feel good, or feel bad, and that there are advantages, and great benefits even, to, you know, being with someone who is family, showing them real, genuine love, as opposed to just attending to their needs. That that makes a difference. What are your thoughts?
Dr. Alyson Maloy:
So, I will say that most people who work in the field of dementia are phenomenal and really love the people they work with. And listening to your question, my heart hurt. Because it’s just such a mechanistic, utilitarian way of viewing a person and, you know, underneath that body, which is always going to fail us, you know, life is a process of losing, you know, gaining and then losing our abilities, um, underneath the body and all the ways in which it fails us is the soul. And a human being always has that soul, regardless of the ways that the body has broken down. That’s another aspect of this disease that I, I work with patients on is to understand no matter what your body does, you’re still you.
And it’s difficult in a lot of neurologic diseases. Uh, and especially for example, in, um, dementia, where, um, what we think of the you changes. People’s personalities can change, their life history, memory changes and whatnot. But really giving the dignity to the individual throughout their life, I think is essential.
Assisted living
One reason assisted living, um, can be better than being at home actually, is that it provides structure. When someone’s at home and their natural interests become less and they desire to do less – which is a natural process, part of the disease, it’s not necessarily a sign of depression – um they would just be isolated, but in assisted living and nursing homes, there’s a lot of activities that are just brought to the patients, dancing, and artwork and even field trips.
Also – and I faced this just this week with a couple – where the husband has Alzheimer’s and he’s aggravated that his wife is micro-managing him. The wife is actually not micromanaging him. She’s actually just doing what needs to be done. Like making sure they leave the house on time for a doctor’s appointment or making sure he takes the medication. And he needs someone to remind him of those things. Um, and in that case, I think assisted living would actually make them happier because then somebody else can be reminding him about those things and he won’t feel like his wife is nagging him.
Dr. Ed Bilotti:
Sure, and better for the relationship. And depending on the stage of progression, uh, there are different degrees of help, uh, that a person needs or that a caregiver should or should not provide right? Too much or too little help.
Dr. Alyson Maloy:
Yeah. Yeah. I really like, uh, Dr. Barry Reisberg‘s approach to retrogenesis and the developmental stages of Alzheimer’s disease. Um, he is a world-renowned Alzheimer’s researcher. I worked with him at NYU. And he has shown that the progression of Alzheimer’s disease from a skillset standpoint is the reverse of our development as children.
So just like from age five, to age seven, to age 12, we gain the ability to do more and more. And our parents give us more and more freedom. The same happens with Alzheimer’s in reverse. And so by using the global deterioration scales, the GDS and the FAST scale, both of which are clinical rating tools that clinicians can use, you can actually determine the developmental age of a person with Alzheimer’s and then it helps you determine their needs in the community.
So, you can say, okay, this person is now at a developmental age of seven years old, what would I let a seven-year-old do? They can, okay, they can put some food in the microwave, but I’m not going to let them cook on the stove if I’m not home. And it’s just a really easy way for families to figure out, okay, what’s too much and what’s too little.
Dr. Ed Bilotti:
Fantastic. I wasn’t familiar with those scales.
Dr. Alyson Maloy:
They’re really helpful. One thing I would add is that patients also don’t need to feel obligated to engage in treating. Let’s use Alzheimer’s disease for an example, although we have a small benefit from donepezil and memantine, which are usually the two mainstays of medication treatment at this point in time for Alzheimer’s disease, they’re not disease modifying. They’re not going to significantly prevent the decline of the disease.
And in my experience, a lot of patients feel over medicalized. They’re tired of the pill boxes. They’re tired of the doctor’s visits, they’re tired of all that. And there’s nothing wrong with deciding to not participate in treatment. I think that just because we are blessed and we live in a country where we do have access to, uh, the gold standard of care in many things, it’s also a personal choice to be made how much time, money, and effort somebody wants to put in to these things.
There is no right or wrong answer. You don’t have to take medications. You don’t have to eat right, you don’t have to exercise, you don’t have to do anything. Each individual for themselves has to do a risk-benefit analysis of, okay, what pleasure am I going to get out of eating junk food to the day I die? Uh, what pleasure am I going to get out of knowing that I’m doing everything possible to, uh, take care of myself? And that’s a different equation for everybody. I think sometimes patients are up on a mouse wheel of kind of trying to follow their clinician’s directives and they feel like they don’t have a sense of control or ownership about the decision-making process.
And in any decision made between a doctor and a patient, it’s really a shared decision-making process where you have to construct the life that you want. Um, and that’s, uh, you’re the ultimate expert on what that.
Dr. Ed Bilotti:
That’s a very interesting perspective. And it reminds me of an uncle who had known heart disease and he was constantly being yelled at by his wife and his kids because, you know, he loved his big bowl of ice cream every night. And he’d say, look, I don’t care. I want to enjoy myself.
Dr. Alyson Maloy:
There’s always a price to be paid for one’s choices. And that includes your choice to buy medication, take medication, go get imaging, go get lab tests. I think that people do more when they’re personally invested and they are choosing to do it rather than being told this is what you’re doing, his is what you’re doing, and kind of locked into it.
And a lot of patients will complain about having to do certain things. And I always try to say, well, you get to do. You get to go get a brain MRI if you want to. You don’t have to do anything, but you you’re blessed in that you have that opportunity.
Especially older people. We have to be careful to not infantilize people. Like you said, with your uncle and being yelled at, he’s still a grown man.
Dr. Ed Bilotti:
When you mentioned before, you know, they’re tired of the pill boxes. I think we, our society, has become very focused on pharmaceuticals and even younger people are starting the day with a handful of pills.
But I think it’s been known for a long time that polypharmacy – lots and lots of medications that have been added and accumulated over the years by this or that doctor for this or that problem – and by the time a person is an older adult, they’re on a crazy number of different medications. And I imagine part of what you have to do also is sorting through that and which of these may be contributing to cognitive deficit or cognitive dulling?
Dr. Alyson Maloy:
Yeah, for sure. One of my favorite things to do is to take away medications.
Dr. Ed Bilotti:
In response to what you were saying about it, being a collaborative effort between the patient and the doctor to make those decisions about which treatments and which diagnostic tests to accept or not, traditionally, that was, and still to this day remains a criticism that a lot of people have about the medical establishment and about doctors. That doctors can be too patriarchal. And I, as the doctor tell you what to do as a patient and you follow my orders and my direction, and you don’t question that.
So a lot of people have this concept that doctors are somehow arrogant or condescending. So sometimes people might think that they’re going to feel more comfortable with, say, an advanced practice nurse or a physician’s assistant or a social worker for that matter for mental health issues, uh, because of that, that, uh, notion of they feel this person can understand me, more on my level. But I think the field of medicine across the board has changed dramatically over the years.
And I think you’re right. I think it is much more, it’s kind of like the, the pediatrician, you know, when I was a kid and I, and I had to go to the doctor, the doctor was wearing a white coat, you know, and he had the little round glasses and the stethoscope. You were shaking in your shoes and you didn’t know what the doctor was going to do to you.
Pediatricians, pediatric pediatricians today are much more sensitive and aware of these things. And generally, their offices are more accommodating and they’re wearing plain clothes, and they may have a little Teddy bear clipped to their stethoscope or something like that. Right? So I think the across the board things have changed and it’s important to recognize that.
Dr. Alyson Maloy:
Definitely. And I’ll also say that your doctor wants you to share with them if you feel they are being controlling. A relationship between a doctor and a patient is just like any other relationship. It takes work. We’re going to disappoint each other. We’re going to make each other mad. It is a relationship.
And it’s one of the most intimate relationships, ideally, that you can have. So, you do have to find the physician that has the personality and practice style that you want. But also even with that person, when they do something that doesn’t sit right with you, speak up, um, you know, that’s the way you keep the lines of communication open.
And I want to go back to something you said about polypharmacy and prescriptions, uh, in the field of psychiatry, we’ve had this horrific move towards “med management.” I get people calling me often, you know, I’m looking for someone for med management. I tell patients that I don’t do “med management.”
The field of psychiatry is so much bigger than med management. As psychiatrists, we need to understand a person’s psychological profile, their interpersonal habits, their lifestyle habits, their emotional world, their work, their medical problems, all of it. And so yes, managing medications, it’s an important piece of being a psychiatrist.
And that’s why we spend so many years studying psychopharmacology. But, um, if you go to a psychiatrist and really, you know, your time is limited to a 15-minute med check, um, it’s really a statement on how the field of medicine has changed because of corporate interests.
Sometimes, um, insurance companies won’t pay your psychiatrist to do therapy with you. They want you to go get therapy from, let’s say an LCSW, and they only will pay your psychiatrist to do med management.
I’m in private practice. So, I’m free from that. I don’t take insurance. So, I actually can include in my practice, the broader domain of psychiatry, which, um, I hope we can get back to in the.
Dr. Ed Bilotti:
Dr. Alison Malloy, it’s been enlightening and informative, and delightful to talk with you. Thank you for being my guest for our premier episode.
Dr. Alyson Maloy:
My absolute pleasure. Thank you, Dr. Bilotti
Dr. Ed Bilotti:
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Rovelli, C., Segre, E., Carnell, S. (2018). The Order of Time. Riverhead Books.
Fuhrman, Joel. (2020). Eat for Life. HarperOne.